Empowering Families: Navigating the Journey of Type 1 Diabetes Awareness and Support

November is a significant month for many reasons. As we observe Diabetes Awareness Month, we also celebrate National Family Caregivers Month—a time to reflect on the challenges and triumphs of those who care for loved ones with chronic conditions. Having hosted several workshops with parents of children living with type 1 diabetes (T1D) as part of an SBIR study supported by the National Institute of Minority Health and Health Disparities, I’ve had the privilege to hear firsthand about their journeys, the trials they face, and the resilience they embody. We conducted hundreds of interviews with parents across different ethnicities, and their diverse experiences provided valuable insights into the unique challenges and strengths present in each community. Their stories are poignant reminders of the love and commitment that define family caregiving.

Understanding the Challenges of Type 1 Diabetes in Children

Through my interactions with these families, I've come to appreciate the delicate balance they strive to achieve between encouraging independence in their children and ensuring their safety. It’s a tightrope walk; parents want their kids to take charge of their health—monitoring blood glucose levels and understanding their dietary choices—while constantly worrying about their well-being. This tension is not just a logistical challenge; it significantly impacts a child's self-esteem and personal growth.

One theme that emerged consistently during our workshops was the need for community. Many parents expressed feelings of isolation, yearning for connections with others who truly understand their experiences. The support they find—whether through online forums or local meet-ups—becomes a lifeline, offering solace, shared strategies, and the comfort of knowing they are not alone in their struggles. That’s why it’s important to have organizations like Breakthrough T1D, which is dedicated to supporting families affected by type 1 diabetes. Breakthrough T1D provides educational resources, peer support, and community events that empower families to navigate the complexities of diabetes management together.

The quest for accurate information can also feel daunting. Parents often find themselves overwhelmed by the sheer volume of resources available, trying to determine what is relevant and reliable for their unique situations. The constant worry of "What if?" looms large, as they grapple with the fear of making mistakes that could have dire consequences for their child’s health. This immense responsibility can feel like a heavy burden, one that weighs on their minds day and night.

Building a Supportive Network

As I listened to parents share their stories, it became clear that support from family, friends, and school personnel is essential in navigating the complexities of T1D. Yet, many families struggle to cultivate a network that fully grasps the intricacies of diabetes care. The right support system can significantly enhance a child’s experience, ensuring they feel understood and valued both at home and in educational settings.

The emotional impact of caring for a child with T1D is profound. Many caregivers shared their need for mental health resources to help manage the ongoing stress and anxiety associated with the condition. Emotional support isn’t just a luxury; it’s a crucial component that helps families maintain resilience through the ups and downs of diabetes management.

A particularly challenging area that parents mentioned was interpreting data from continuous glucose monitors (CGMs). While these devices can provide peace of mind, the stress of understanding their readings can be overwhelming without proper training. By equipping families with the knowledge they need to confidently respond to this information, we can help them manage their child's health more effectively.

Planning for the Future

As children with T1D grow, their healthcare needs inevitably change. The transition from pediatric to adult care presents a host of uncertainties for parents—questions about finding suitable adult endocrinologists, securing health insurance, and ensuring continuity of care can feel daunting. Preparing for these changes while managing an already demanding condition adds another layer of complexity to their journey.

T1D can also shift family dynamics, with food, glucose monitoring, and insulin injections often becoming the focal point of daily life. Parents strive to ensure that diabetes doesn’t overshadow every family meal or outing, but it’s a delicate balance that requires constant adjustment.

Reflecting on What We’ve Learned

Hearing the heartfelt experiences of these parents has underscored the emotional toll that T1D takes on families. The unending vigilance required creates a backdrop of stress and fear that can permeate daily life. As we work to provide accessible and relevant information, it’s essential that families feel empowered to manage their child’s health with confidence.

Community support plays a vital role in this journey. Many families have found strength in both online and offline networks, where they can connect, share, and uplift one another. Building strong relationships with healthcare providers, particularly pediatric endocrinologists, also proves crucial for the guidance and advocacy families need.

Financial concerns are another significant burden for parents. From the high costs of medications and supplies to the anxiety around long-term insurance coverage, these challenges can feel overwhelming. Advocacy and awareness are essential to support T1D families and alleviate some of this financial strain.

Social stigma surrounding T1D is yet another hurdle. Families voiced the need for greater public education to foster a supportive, stigma-free environment for their children. By raising awareness, we can help combat misunderstandings and create a more inclusive society.

Finally, I’ve seen how parents cope with these pressures—inventive strategies like humor, support groups, or simply finding solace in shared experiences. These coping mechanisms empower families to find hope and strength, even in the face of adversity.

Together, We Can Make a Difference

As we mark Diabetes Awareness Month, let’s take a moment to honor the incredible strength of families managing T1D. As a fellow mom, I understand the challenges you face and the emotional toll it can take. To all the parents, caregivers, and loved ones out there: you are not alone. Your challenges are seen, your victories celebrated, and we stand with you every step of the way. Together, we can make a meaningful difference in the lives of those affected by type 1 diabetes.

Insights from ISPAD 2024: Transformative and Urgent Challenges in Youth Diabetes and Obesity Care

As we observe Diabetes Awareness Month this November, I recently returned from the International Society for Pediatric and Adolescent Diabetes (ISPAD 2024), where discussions underscored how critical and complex managing youth diabetes and obesity has become. Some noteworthy themes were:

🔬 Neuroinflammation and Obesity: Research highlights that youth with overweight/obesity experience elevated white matter neuroinflammation, regardless of dysglycemia status. This could influence early brain health, even without progressing to diabetes.

🧬 Gut Microbiome Shifts in Youth-Onset Type 2 Diabetes: A study on metformin and liraglutide in youth shows positive shifts in bile acid and short-chain fatty acid-producing gut microbiota. While the clinical relevance of these microbiome changes is not yet clear, this could guide future treatment paths.

💔 The Global Crisis of Diabetes: 537 million people worldwide live with diabetes, including 9 million with type 1 diabetes (T1D). T1D alone results in an average of 32 years of healthy life lost per person. In the U.S., people with T1D face a daily struggle—spending on average 7 hours in hyperglycemia and over 90 minutes in hypoglycemia.

💡 Rethinking T1D Management: Most people with T1D do not consistently achieve target blood glucose levels. A multidrug approach (insulin + SGLT inhibitors, etc.) may offer a more robust metabolic control to reduce risks, but more studies are needed to build clinical guidance and incentivize investment in these therapies.

📈 Equity in Access to Technology: Diabetes technology access is far from equitable. Many children and families face barriers like the lack of continuous glucose monitors (CGMs) and resources in multiple languages. As one parent expressed, "The pump is one thing...but you should walk out of the hospital with a sensor." The necessity of CGMs for safe, daily management is clear, yet disparities persist.

💤 Psychosocial Impacts on Families: The mental load on caregivers of children with T1D is profound. Psychosocial support, automated insulin delivery, and access to psychologists can dramatically improve quality of life for both the young patient and their families, leading to benefits that begin early and are sustained over time.

⚖️ Weight Loss and Obesity: Youth obesity remains a predictor of future cardiovascular disease. Effective weight management, including surgical options, shows promising improvements in metabolism and appetite control versus restrictive dieting, addressing the broader spectrum of comorbidities linked to obesity.

💬 Empowering Adolescents: Addressing body image, disordered eating, and the psychosocial aspects of T1D is essential. Diabetes education and support for youth must extend beyond clinical targets to encourage healthy body relationships and long-term mental well-being.

Main Takeaways from ISPAD

Diabetes as a Lifelong Health Crisis

With diabetes affecting 537 million globally, the statistics shared were a sobering reminder of the condition’s reach. For individuals with type 1 diabetes (T1D), the daily experience is relentless. The average person with T1D spends seven hours a day in hyperglycemia, plus over an hour and a half hypoglycemic. This “glycemic roller coaster” has serious implications for daily quality of life and cognitive functioning, underscoring how crucial it is to innovate and improve diabetes management. A stronger focus on simplifying glycemic control is essential to empower patients and reduce long-term risks.

Addressing Inequity in Diabetes Technology Access

The discussions around CGM access highlighted the structural barriers that many families face in managing diabetes effectively. While CGMs provide invaluable data for managing T1D, many families lack access to this technology due to socioeconomic factors or language barriers. The insights shared on racial and ethnic disparities in diabetes management hit home. Technology can only be transformative if it’s accessible and adaptable to diverse needs, including in the languages patients and families understand.

Recognizing the Toll on Families

The psychosocial burden on families dealing with T1D is substantial. Studies highlighted how support systems, such as psychologists and advanced technologies like automated insulin delivery, are essential to alleviate this burden. The research on how these interventions improve the mental well-being of both patients and parents reaffirms the value of a holistic approach. It was eye-opening to see how, with the right support, families experience less stress, better sleep, and more confidence in managing the disease.

A New Look at Weight Management and Obesity Treatment

Discussions on the physiological effects of restrictive dieting versus weight loss surgery illuminated why sustainable weight loss is such a challenge for young people. Restrictive diets often lead to physiological compensation—slower metabolism and increased appetite—making long-term weight management difficult. In contrast, surgical interventions seem to have opposite effects, improving factors like appetite control and energy expenditure. It was clear that for youth dealing with obesity and its comorbidities, a tailored, non-restrictive approach may be essential to achieve lasting health benefits.

Empowering Youth with a Holistic Approach

Finally, the emphasis on supporting youth with T1D around body image and disordered eating was a welcome reminder that effective care goes beyond physical health metrics. Adolescents with diabetes face unique challenges around body image, so education that supports both their mental and physical well-being is critical.

The Silent Impacts of Obesity on Brain Health

The research showing elevated neuroinflammation in the white matter of youth with overweight or obesity was compelling, particularly as it occurs independently of blood sugar status (dysglycemia). This underscores the silent but serious neurological impact of excess weight in young people—a reminder of how comprehensive our approach to obesity care must be. It isn’t just about metabolic risk; we may need to consider cognitive and developmental factors early on.

Microbiome Research Raises New Questions

The shifts in gut microbiota observed in youth with type 2 diabetes taking metformin or metformin + liraglutide—especially the increase in bile acid concentrations—point to emerging opportunities. Though these changes aren’t directly tied to glycemic outcomes, they hint at complex metabolic pathways that could open doors to more personalized therapies. It’s exciting but also a reminder that our understanding of the microbiome's role in metabolic health is still evolving.

ISPAD 2024 was a powerful reminder of the importance of viewing diabetes and obesity through a multidimensional lens that integrates clinical, psychological, and social factors. As we raise awareness this November, it’s clear that both the clinical and psychosocial dimensions of diabetes and obesity care must advance in tandem. To truly make a difference, we need equitable access to technologies, a strong focus on prevention, and a compassionate approach to family support. This conference reinforced my belief in the need for innovation that is as much about inclusivity and mental well-being as it is about clinical efficacy.

Adhera Health Pioneers Family-Focused Digital Health Solutions for Children with Chronic Conditions

Reveals Transformative Research Results at ISPAD 2024

Adhera Health unveiled groundbreaking research at the International Society for Pediatric and Adolescent Diabetes (ISPAD) conference showcasing how innovative digital interventions can enhance wellbeing for families affected by Type 1 Diabetes (T1D) and childhood obesity.

The first study (NCT05483803), "Impact of a Personalized Digital Intervention on the Wellbeing of Caregivers of Children with Type 1 Diabetes and Diabetes Management," revealed a significant link between caregiver stress and the child's overall wellbeing. The findings underscore the critical importance of providing comprehensive support to the entire family in managing chronic conditions. The study enrolled 90 families of children with type 1 diabetes aged 8-15 years. Caregivers interacted with the Adhera® Caring Digital Program which emphasized education, provided motivational, gradual, and substantiable change recommendations along with a dedicated coach. Caregivers completed surveys on their own wellbeing and their child's quality of life at the start and end of the 3-month program.

Results showed a significant correlation between caregiver stress and poorer child wellbeing (r=-0.37, p<0.001), emphasizing the importance of addressing caregiver wellbeing. Post-intervention, the percentage of families reporting good wellbeing increased from 31.8% to 43.4%, while those with poor caregiver wellbeing decreased from 38.8% to 9.6%.

Adhera Health also presented initial findings from an ongoing study sponsored by the National Institutes of Health/National Institute on Minority Health and Health Disparities (1R43MD018551-01). The presentation was titled " Adaptation of a Digital Health Intervention for Chronic Condition Related Fatigue to the Latino Population.”

This research seeks to rigorously assess the acceptability of a digital intervention within the Latinx community and devise a tailored strategy for its effective implementation in urban Latinx neighborhoods. Adhera Health conducted over 15 participatory workshops, engaging more than 150 families and stakeholders, including parent groups from diverse backgrounds such as African American and non-Hispanic white families. These sessions provided critical insights into the unique needs and preferences of the Latinx population, establishing a foundation for culturally sensitive, community-driven solutions in chronic disease management. Latinx parents of children with T1D rated the Adhera Caring Digital Program positively (77.5-88), while parents of children with obesity scored even higher (94-100). All participants would recommend the program, describing it as "easy," "understandable," and "user-friendly."

"These findings validate our mission to adopting a holistic approach that supports the entire family unit,” said Ricardo C. Berrios, Co-Founder and CEO of Adhera Health. “Our research proves that personalized digital interventions significantly enhance caregiver wellbeing, which in turn enables families to more effectively manage their child’s chronic condition, ultimately leading to improved quality of life for the child and the family as a whole.”

Adhera Health is actively scaling its family-focused model to encompass a broader range of pediatric chronic conditions and communities across the US. Its vision is to ensure that all families of children with chronic illnesses have equitable access to innovative digital health solutions that are tailored to address their specific needs and improve health outcomes.

Adhera Health at HLTH 2024

Adhera Health's team will showcase live demonstrations of the Adhera Caring Digital Program at the Scale Health booth (#3210-13) at HLTH 2024, where attendees can experience how the program empowers families managing pediatric chronic conditions through engaging and personalized support.

This blog article is a reprint of the press release - https://www.einpresswire.com/article/750051619/adhera-health-pioneers-family-focused-digital-health-solutions-for-children-with-chronic-conditions

Con fecha 2 de noviembre de 2023, la Presidencia del Instituto Valenciano de Competitividad Empresarial (IVACE) ha

dictado resolución por la que se ha aprobado la concesión de la subvención de 71.038,12 € relativo al proyecto:

Nº Expediente: IMIDTA/2023/84

PROGRAMA: PROYECTOS DE I+D DE PYME (PIDI-CV)

PROYECTO: MONTSE - Design and developMent Of explaiNable AI models for the understanding of health staTuS in lungcancEr patients via digital biomarkers

Combating Childhood Obesity: A Comprehensive Approach for a Healthier Generation

September is National Childhood Obesity Awareness Month, a time for us to come together as a community and focus on the well-being of our children. At Adhera Health, we understand the challenges families face when it comes to managing childhood obesity. As a trusted source of guidance and support, we are here to provide you with the resources and information you need to help your child lead a healthier life.

The Multifaceted Impact of Childhood Obesity

Childhood obesity is a complex issue that affects not only a child's physical health but also their emotional well-being. According to the Centers for Disease Control and Prevention (CDC), children with obesity are at a higher risk of developing chronic conditions such as asthma, sleep apnea, and type 2 diabetes. They may also face emotional struggles, including bullying, loneliness, and low self-esteem.  As parents, it's natural to feel overwhelmed and concerned about your child's health and future.

The Long-Term Effects of Childhood Obesity

One of the most worrying aspects of childhood obesity is its potential to continue into adulthood. Children who struggle with obesity are more likely to become adults with obesity, which can lead to even more serious health problems later in life. This is why early intervention, and a supportive, nurturing environment are crucial in helping children develop healthy habits that will last a lifetime.

The Impact on Families

As parents, you play a vital role in shaping your child's eating habits and activity levels. However, making lifestyle changes to support a healthier child can be challenging, especially if other family members are also struggling with weight issues. You may feel guilt, shame, or a sense of failure, and the stress and worry about your child's health can take a toll on your own mental well-being. It's important to remember that you are not alone in this journey, and seeking support is a sign of strength.

The Economic Burden and Its Impact on Latino Communities

The economic impact of obesity is significant, with direct medical costs estimated at $260.6 billion annually as of 2016. This burden is particularly pronounced within the Latino community, where nearly 44.8% of adults are affected by obesity. Addressing this issue through culturally tailored interventions and community-based programs that promote healthier eating and increased physical activity is essential to mitigate the economic impact and foster a healthier generation.

A Holistic Approach to Managing Childhood Obesity

At Adhera Health, we believe in a comprehensive approach to managing childhood obesity.

 This includes:

1.     Encouraging healthy eating habits by offering a variety of fruits, vegetables, and whole grains, while limiting sugary drinks and snacks.

2.     Promoting physical activity by making exercise a fun and regular part of your family's routine and encouraging kids to play sports or engage in outdoor activities.

3.     Being a positive role model by making healthy food choices and staying active yourself.

4.     Getting involved in the community by supporting local events that promote physical activity and healthy eating and working with schools to ensure children have access to nutritious meals and plenty of opportunities for physical activity.

5.     Emphasizing family cooperation and recognizing that combating childhood obesity requires the entire family's commitment and support.

6.     Focusing on open communication and mental health by fostering a supportive environment where children feel comfortable sharing their feelings and challenges.

A Call to Action

National Childhood Obesity Awareness Month is an opportunity for us to unite and make a positive impact on the lives of children. By educating ourselves and others, we can help prevent childhood obesity and give our kids the healthy future they deserve. Remember, small changes can make a big difference, and it's never too early to start promoting healthy habits.

At Adhera Health, we are here to support you every step of the way. Let's work together to keep our children healthy, happy, and thriving.

The Adhera Health Team.

Understanding the Role of Caregivers: Advancing Women's Equality through Recognizing Informal Care

As we observe Women's Equality Day, it presents a unique opportunity to explore the diverse roles women play in our society. Beyond the strides made in education, the workplace, and politics, there's an often-overlooked domain where women significantly contribute: informal caregiving.

These unsung heroes, predominantly women, quietly shoulder the responsibility of caring for loved ones in need, often at the expense of their own health and career opportunities. Their contributions are profound, their sacrifices significant, yet their well-being and economic value are frequently overlooked in the broader discussion of gender equality.

Let us delve deeper into this vital yet underappreciated facet of women’s lives. These dedicated individuals are the backbone of caregiving in our society, providing invaluable support to loved ones. However, their selfless acts often come at a significant cost to their own health, financial stability, and career advancement, thereby perpetuating gender inequities.

Women make up around 60% to 75% of informal caregivers in the United States.

〰️

Women make up around 60% to 75% of informal caregivers in the United States. 〰️

Informal caregiving is often termed the "invisible workforce" of the healthcare system, constituting a substantial portion of caregiving duties in the United States. According to data from the National Alliance for Caregiving and AARP, approximately 53 million Americans are informal caregivers, with women comprising most of this demographic. In fact, various studies and reports have consistently shown that women make up around 60% to 75% of informal caregivers in the United States. These caregivers assist loved ones with a myriad of tasks, including bathing, dressing, meal preparation, medication management, and transportation to medical appointments.

Despite their indispensable contributions, informal caregivers face many challenges that can adversely affect their health and overall well-being. One significant challenge is the mental and emotional toll of caregiving. Studies have shown that caregivers experience higher rates of stress, anxiety, depression, and burnout compared to the general population. In fact, research published in the Journal of the American Medical Association (JAMA) found that caregivers have a 63% higher mortality rate than non-caregivers of the same age.

Furthermore, caregivers from minoritarian communities often encounter additional barriers to accessing resources and support. Cultural norms and expectations may dictate that caregiving responsibilities fall disproportionately on women within these communities, exacerbating the strain on their physical and emotional well-being. Limited access to culturally competent healthcare services and language barriers can further complicate matters, hindering these caregivers from seeking the support they desperately need.

Addressing the disparities faced by informal caregivers is essential for advancing gender equality. Firstly, there must be increased awareness and recognition of the invaluable role that caregivers play in our society. Policymakers, employers, healthcare providers, and community organizations must collaborate to implement policies and programs that support caregivers, including paid family leave, caregiver training programs, and financial assistance.

Additionally, efforts to destigmatize discussions around mental health within minoritarian communities are imperative. Culturally sensitive outreach and education initiatives can help dispel misconceptions and encourage caregivers to prioritize their own mental well-being.

As we commemorate Women's Equality Day, let us not only celebrate the achievements of women in all spheres of life but also reaffirm our commitment to supporting the health, economic stability, and overall well-being of informal caregivers. By recognizing and addressing the challenges they face, we can take significant steps toward achieving true gender equality.

With gratitude for the tireless dedication of caregivers everywhere,

The Adhera Health Team.
 

Mentoring and Internationalization Support Program

Programa Mentoring y Apoyo a la Internacionalización

Shining a Light on Mental Health: Supporting Families of Children with Chronic Conditions

Living with a chronic health condition can be challenging for anyone, but when it affects a child, the impact reverberates throughout the entire family. Families of children with chronic conditions like type 1 diabetes, growth hormone deficiency, or obesity often face unique emotional and psychological challenges that can strain family dynamics and individual well-being. 

Understanding the impact 

When a child is diagnosed with a chronic condition, it can disrupt family dynamics and routines. Parents may experience feelings of guilt, anxiety, and stress as they navigate the complexities of managing their child's health. Siblings may feel neglected or resentful due to the increased attention given to the affected child. Siblings may experience anxiety, depression, or behavioral issues as they cope with the disruption to their family life. Additionally, financial strain and social isolation can further exacerbate the situation, placing additional strain on family relationships. 

What can families do? 

Firstly, a crucial aspect is providing comprehensive education and resources. Empowering families with accurate information about their child's condition, treatment options, and available support networks can help reduce anxiety and uncertainty. This education should be tailored to the family's specific needs and delivered in a compassionate manner, ensuring they feel equipped to navigate the complexities of managing a chronic illness. 

Secondly, it is important to foster open communication within the family unit. Encouraging parents and siblings to express their feelings and concerns can alleviate the sense of isolation often experienced in such circumstances. This could involve regular family meetings where everyone has the opportunity to share their thoughts, fears, and triumphs, creating a supportive environment where emotions are validated, and solutions can be collectively explored. 

Thirdly, prioritizing self-care for caregivers is essential. Caring for a child with a chronic condition can be physically and emotionally draining, so it's vital for parents and other caregivers to prioritize their own well-being. Encouraging them to engage in activities that promote relaxation, such as exercise, mindfulness, or hobbies, can help prevent burnout and maintain resilience in the face of ongoing challenges. 

Finally, integrating mental health support into the child's healthcare team can ensure that the entire family's well-being is addressed comprehensively. Digital solutions such as Adhera Caring Digital Program can provide tailored interventions and support services as needed to the whole family. 

Conclusion 

The mental health of families facing childhood chronic conditions is a critical aspect of overall well-being. By acknowledging the unique challenges and implementing strategies to support mental health, families can foster resilience, strengthen relationships, and navigate the journey together with greater ease and understanding. Remember, you are not alone, and seeking support is a sign of strength, not weakness. 
 

New Study Reveals Impact of Personalized Digital Companion on Caregivers of Children with Type 1 Diabetes

Adhera Health’s AI-Precision Digital Companion Improves Wellbeing of Caregivers for Children with Type 1 Diabetes

Groundbreaking research on the beneficial effects of Adhera Health’s AI-Precision Digital Companion on the wellbeing of caregivers of children with type 1 diabetes and its effectiveness to support personalized pediatric care is set to be unveiled at the 46th Congress of the Spanish Society of Pediatric Endocrinology – SEEP 2024.

Led by researchers from Hospital Universitario Miguel Servet and Adhera Health and sponsored by Novo Nordisk, this study (CARING-T1D) sheds light on the transformative potential of personalized digital interventions to enhance health outcomes for families managing chronic conditions. Building upon previous findings released at SEEP and other endocrinology conferences, the study underscores the pivotal role of personalized digital companions in providing tailored support, empowering caregivers, and driving positive engagement and behavior change to better integrate care for families affected by type 1 diabetes.

Dr. Antonio de Arriba, Pediatric Endocrinologist at the Hospital Universitario Miguel Servet and the principal investigator, will present the new findings at this year’s SEEP meeting, which takes place May 8 to 10, 2024, in Las Palmas de Gran Canaria (Spain).

“The findings highlight how Adhera Health’s personalized digital companion and interventions impact the wellbeing of caregivers and children with type 1 diabetes, revolutionizing pediatric healthcare by offering targeted support, educational content, and empowering the entire family unit,” remarked Dr. de Arriba, “This study illustrates the potential of delivering precision medicine that acknowledges the uniqueness of each family, which is essential in pediatric care for all conditions.”

Results of the new study demonstrate that a digital intervention program delivered by the Adhera AI-Precision Digital Companion had a positive effect on the overall wellbeing of the parents while also supporting integrated care via advanced AI algorithms. This means that the intervention not only positively impacted the parents’ emotional and psychological state but helped clinicians better understand the needs of families.

"The wellbeing of the entire family is paramount in managing diabetes effectively," emphasized Ricardo C. Berrios, co-founder, and CEO of Adhera Health. "Our study, alongside others we've conducted, highlights the importance of involving the whole family unit in the design of interventions and treatment plans for pediatric diabetes. It's crucial for healthcare strategies to address the needs of both children and their primary caregivers to achieve better health outcomes. Our findings support that data-driven solutions can help personalize pediatric care by considering the distinct needs of each family."

The study results also show that stratifying families based on the child’s metabolic control and the wellbeing of the caregiver provides a valuable approach for assessing the overall wellbeing of the family unit. By considering these factors together, healthcare professionals can gain a more nuanced understanding of the family’s health, and subsequently tailor interventions more effectively to meet the specific needs of each family.

This blog article is a reprint of the press release - https://www.einpresswire.com/article/709927170/new-study-reveals-impact-of-personalized-digital-companion-on-caregivers-of-children-with-type-1-diabetes

National Minority Health Month - Be the Source for Better Health

Since 2002, the National Institute on Minority Health and Health Disparities (NIMHD) has annually celebrated National Minority Health Month in April. This initiative traces its roots back to 1915 with the establishment of National Negro Health Week by T. Washington, marking a longstanding commitment to addressing disparities in healthcare access and outcomes*.

The FDA defines health equity as “the attainment of the highest level of health for all people, where everyone has a fair and just opportunity to attain their optimal health regardless of race, ethnicity, disability, sexual orientation, gender identity, socioeconomic status, geography, preferred language, and other factors that affect access to care and health outcomes.” Despite strides made in awareness and policy, significant work remains to achieve this vision.

In the realm of digital health, there’s growing evidence of the positive impact digital tools can have on chronic condition self-management. However, studies indicate a concerning trend: low adoption rates among minority populations in the U.S., which often stem from poor adaptation of digital health solutions to minorities’ specific needs. This can be attributed to a systemic lack of involvement of minority groups in the design of these digital health solutions. Consequently, this is raising concerns about potential exacerbation of health inequalities.

Recognizing the potential of digital health solutions to improve health outcomes, Adhera Health prioritizes inclusiveness as a value in both our daily operations and our product development. We believe that personalized solutions tailored to the unique needs of health minorities are essential for achieving health equity. In line with this commitment, we were honored to receive a NIH/NIMHD award in September 2023 for advancing our Adhera Precision Digital Companionä platform for chronic conditions and adapting it to the U.S. Latinx population with the aim of reducing health inequalities.

Adhera Health is privileged to collaborate with Dr. Jennifer Raymond, MD, MCR, Chief of the Division of Endocrinology, Diabetes, and Metabolism at Children’s Hospital Los Angeles, on the NIH/NIMHD award. Dr. Raymond is enthusiastic about our project and is particularly eager to spearhead the clinical research on pediatric diabetes, encompassing the comprehensive care of both the physical and mental wellbeing of family caregivers of Latinx children with type 1 diabetes.

Dr. Raymond strongly advocates for leveraging digital health technologies to alleviate distress among young individuals with diabetes, particularly those residing in marginalized communities. A study published in 2023 by the Journal of Diabetes Science and Technology, led by Dr. Raymond and her colleagues, revealed that adolescents and young adults with type 1 diabetes who primarily engage in diabetes clinic visits via telehealth exhibit improved overall attendance and experience lower levels of diabetes-related distress compared to those attending in person.

To support our efforts and raise awareness, we encourage you to explore the Minority Health and Health Equity Resources Catalog, which offers a comprehensive list of resources available in multiple languages: https://www.fda.gov/consumers/minority-health-and-health-equity/minority-health-and-health-equity-resources

Together, let’s strive for a future where everyone has equal access to quality healthcare, regardless of their background or identity. 

Sources: 

* https://www.nimhd.nih.gov/programs/edu-training/nmhm/

Unlocking Insights with Kwame Ulmer: A Journey Through MedTech, FDA, and Venture Capital

This interview with Kwame Ulmer is part of a larger series of interviews where we discuss the intersection of healthcare and technology with subject matter experts from Adhera Health’s Advisory Board.

Kwame Ulmer leads MedTech Impact Partners (MIP), bringing over twenty years of experience evaluating medical technologies from both government and private sectors. In addition, Mr. Ulmer is a venture partner at Wavemaker Three-Sixty Health, the leading Southern-California based, early-stage venture capital firm focused on the healthcare industry. His career highlights include a 12-year tenure at the FDA in roles such as Deputy Director and Branch Chief, as well as serving as Vice President of Regulatory Affairs and Quality Assurance at Implant Direct, a subsidiary of Danaher Corporation. In addition to Adhera Health, Mr. Ulmer is a board member for Essenvia Inc. and Strados Labs Inc. He is a lecturer and researcher at the University of California, Los Angeles, and the founder of MedTech Color, a nonprofit aimed at enhancing the representation of persons of color in the medical device industry.

During your 12 years at the US Food and Drug Administration, you occupied leadership roles including deputy director and branch chief. How have the insights and challenges faced in these roles shaped your current approach at MedTech Impact Partners and Wavemaker 360 Health, specifically when advising startups on their journey through the FDA's rigorous evaluation process?

“There are a couple of ways my time at the FDA informed my decision-making afterward.” In his positions at the FDA, Mr. Ulmer was able to review a variety of products, “from medical devices to diagnostics, to digital health solutions – and a range of applications.” As Mr. Ulmer explains, the knowledge he gained at the FDA engaged him with “a sense of the core issues regarding establishing safety and effectiveness for any product and the basic processes and principles for evaluation that I could apply to a range of technologies when I left.”

Mr. Ulmer says that his time with the FDA taught him about the importance of knowing how to talk to the FDA. “What really became apparent after I left, was the impact of questions from the FDA and the activities that set off that accompany.” Companies put a lot of energy into “effectively responding to the FDA, and it really is a bit daunting.” When interacting with the FDA, “one has to be mindful, first of all, are the FDA asking the right questions, not having a whole laundry list of not critical or not germane or not necessary questions?” When you’re outside of the agency interacting with the FDA, you are working with companies “to effectively and efficiently answer their questions as quickly as possible, while using the right amount of resources in the organization and hopefully, not having the entire organization seize up.”

You have experience evaluating over 1000 medical technologies throughout your career. What patterns or trends have you observed in the evolution of medical technologies and how do these patterns inform your investment decisions at the venture capital level?

Mr. Ulmer explains how he has seen shifts in the medical technology industry over the last couple of decades.

“I’ll talk about the people and then the technology.” When Mr. Ulmer first began working in the regulatory space for medical technologies, he saw the same “teams” of individuals. “There was a leadership profile, and it was a clinician who had discovered a novel way to treat a pain point; sometimes they teamed up with a business-oriented person, and I would be sitting across the table with them talking about some safety or effectiveness issue. Now the profile is more diverse. It could be a former Google employee who found software to treat a mental health condition. It could be someone with no traditional medical device background at all who teams up with someone who came from pharma who wants to take a stab at the medical device industry.” While the type of entrepreneur has shifted somewhat, it still retains that traditional profile. 

“The other thing that has changed over the years is the agency's focus and the industry's focus on all aspects of software-related issues. 10 years ago, the vice president at the time was in danger of having his defibrillator hacked. So, cybersecurity has been around for over a decade for medical devices. It is only in the last three or four years that there has been staffing for FDA experts in software, specifically in cybersecurity, so it has become one of the last elements of holistically established safety effectiveness. So, that is another megatrend: software as a medical device and software in a medical device, and the FDA having the capability to address it in terms of safety and effectiveness.”

What resources exist within the FDA, in terms of technical and technology knowledge, to address the rapid development of tech? For example, for generative AI applied to health care – how can they keep up with new advances?  

“Yeah, it’s a challenge.” says Mr. Ulmer. “This is from reading the publicly available data about how the FDA is responding: number one, an unintended consequence of the pandemic is that there was a surge in staffing these for the FDA to get emergency-use authorizations through effectively.”

The staffing requirement is still there, “in the latest user fund negotiation, the FDA asked for additional staff. I think those staff are still coming online.” Specifically, explains Mr. Ulmer, “software experts are still coming online,” who can be difficult to find because those individuals have a lot of career options, especially in the private sector. “So that is a challenge. Getting that top talent who can address issues like cybersecurity.”

You have great experience overseeing various aspects of fund management, from deal sourcing to advising portfolio company management teams. What pitfalls do you observe startups taking in the MedTech space, and how do you leverage your experience to guide them? 

“Over the years, I've been fortunate enough to establish relationships with the key stakeholders that are needed to build a high quality, safe, and effective medical device, med tech solution, and early on for rarely reasonable reasons, the founding team doesn’t always have access to all the experts that they need. So, a pitfall is not having, within arm's reach: the biostatistician, the clinician, the cyber expert, the biocompatibility experts – all the key team members you need to establish a proof of concept, and later safety and effectiveness. And that's obviously an issue of funding.”

Another pitfall is “companies not knowing, through really any fault of their own, not just that non-dilutive capital like NIH and NSF funding is there, but that most companies do not successfully get their grant approved on the first go around. It normally takes a couple of attempts to get that first a hundred thousand. And then for phase two, you know, for over a million dollars.”

As one of the founders of MedTech Color, you've made a significant effort to advance the representation of persons of color in the medical device industry. What challenges and gaps do you perceive that led to the establishment of this nonprofit? And how do you envision the future of diversity within the medical technology sector?

“The first gap, that was born out of my personal experience and the experience of other executives in the industry, was that it was a lonely experience – which impacted retention.” When people don’t feel a sense of community they tend to leave. “That was something I was dealing with professionally at the time. And so MedTech Ccolors originally was intended to build community, and we did that over the years. We have a network of over 43000 people from a range of ethnic groups and allies.”

In the time Mr. Ulmer spent as a consulting partner, he found that “early-stage companies with diverse teams, despite being more likely to have outsized returns, were not receiving commensurate capital – early-stage investment.” So, he helped to create a pitch competition “to serve as a magnet to attract additional capital from other sources like the NIH and the NSF, their partners for this pitch competition, but also large private companies who could buy strategically aligned companies to enter into their corporate accelerators.”

“So,” says Mr. Ulmer, “those are two examples, community and capital, that are a problem in the industry, and how MedTech Color aims to solve those problems.”

Adhera Health recently won an award specifically to address certain underserved populations in this U.S. and we understand that we still have a long road to a truly equitable future. Have you seen progress since you began MedTech Color?   

“First, I think of four key stakeholders for this to be successful. One is the startups. And I'll give you a brief example. Over the last four to five months, we've seen at least five to six companies focused specifically on treating women going through menopause. That's great, the startup is trying to solve the problem there. The second element to success would be organizations in the government that could provide non-dilutive capital. Right now, there are a handful of sources of capital where you can focus on health equity. The National Institutes for Aging has a challenge where you can address health equity and receive a grand prize. And then, you have the venture capital community. If you look at just women's health investment, it's been flat, so we haven't seen a lot of activity there. And so, the fourth element is a nonprofit community and MedTech Color and MedTech Women are there to serve as a beacon for talent focused sometimes on health equity.” And while Mr. Ulmer believes these organizations are growing and thriving, “the hard truth is the venture capital dollars have not been increasing as much as they could be. And there are some early programs focused on health equity from the government side, but there's still a-ways to go for those two communities.”

Drawing from your experience as a lecturer and researcher at the UCLA Anderson School of Management, as well as your experience as a board member for the University of Virginia’s Licensing & Ventures Group, how do you see the role of academia in shaping and supporting the future of the med tech industry? And how do you ensure that the knowledge and innovations from these academic platforms transition effectively into real-world applications? 

“There are two elements that I've observed for the successful translation of great ideas out of the university and into the private sector to reach patients. One is capital; larger research institutions like UCLA have wonderful innovation funds that can make significant investments to get companies to the prototype stage by de-risking regulations – sometimes even with reimbursement. Those early-stage questions that any company would need to face – they can get the capital before they even form a company through these innovation funds. So, at the University of Virginia where I went to school, there's a seed fund that plays that role. Sometimes they invest alongside angels. And then at UCLA, there's an innovation fund. So, the capital is one piece and that's the role that university should play.” 

Mr. Ulmer explains further, “The other, beyond capital, is the university incentivizing professors to be able to work on these products beyond just a six-month sabbatical. This is hard,” laughs Mr. Ulmer, “but if it can be written, this should be written into the policies and procedures as to what is a factor for getting on tenure track or getting promoted; if part of the incentive for the factors that are considered to promote a faculty member could be formation of entrepreneurial projects, that would be the other major lever. And we talked about that some at the University of Virginia. How do we incentivize faculty to really be entrepreneurial? It's by saying this is a factor in your promotion.”

Why did you choose to join the Adhera Health Advisory Board and what do you see as Adhera Health’s top contributions to the current state of person-centric digital health platforms?  

“Early on at the fund that I work at, and by nature of my work outside of the fund. We started thinking about megatrends, and one megatrend is personalized solutions. Some people call it personalized medicine. There are other terms, but fundamentally more and more software-enabled solutions are targeting the person, and it was really intriguing to be able to be associated with a company like Adhera Health which is focused on a personalized solution. As the company grew and established markets and patients to reach, I had a personal connection to the potential future ability to impact patients with autoimmune diseases because it has directly impacted my family. And professionally, I'm attracted to companies with diverse leadership teams, and that's immediately what I saw when I met you and got to know other members of the team,” he says, speaking to Ricardo Berrios, CEO of Adhera Health, “and I thought that that was going to be an advantage for you moving forward. So, for those reasons and many more, I'm delighted to be associated and work with you, Ricardo, and the company. There is going to be an amazing impact on patients, and I'm just delighted to be with you on this journey.”

Finding Digital Solutions for Multiple Sclerosis and Fatigue

This interview with Pablo Villoslada, MD, is part of a larger series of interviews where we discuss the intersection of healthcare and technology with subject matter experts from Adhera Health’s Advisory Board. 

Dr. Pablo Villoslada is an accomplished neurologist with over 20 years of experience in translational medicine, bridging academia, biotech, and pharmaceuticals to pioneer treatments for neurological diseases. As a member of the Adhera Health Board of Advisors, Dr. Villoslada brings with him comprehensive expertise in drug development, from discovery through clinical trials to regulatory processes with bodies like the FDA and EMA. Dr. Villoslada’s experience extends to medical devices, including neurostimulation, bioinformatics, and machine learning. Beyond medical practice, Dr. Villoslada is a serial entrepreneur, founding and advising numerous biotech and MedTech startups in CNS and ophthalmology (Bionure/Accure, QMenta, SpiralTx, Attune Neurosciences, CLight, Adhera Health, NeuroPrex). 

What made you specialize in neurology? 

After finishing medical school, Dr. Villoslada was interested in surgery and medical conditions. “I was very passionate about science and trying to understand how the brain works, what is the basis of brain disease, and how to cure brain diseases,” says Dr. Villoslada. “This is the reason why I decided I chose neurology because I was interested in doing research and care for diseases of the brain. This was my main interest.” 

How has the field of neurology changed over the past 10 years? What areas have you seen the most change as far as treatments are concerned?  

Dr. Villoslada explains how the brain is more complicated and less understood than any other system in body. "For this reason, in the past centuries we have only made some progress." Now, he explains, advances in fields such as immunology and cardiology, have ushered in a golden era for therapeutics with respect to neurology. 

“For the last five years, we have seen a new revolution in neurology. And this is due to genetics, meaning the ability to genotype everybody, identify all the mutations now, now all the RNA technology that has been a revolution for vaccines and now is becoming a revolution for therapeutics for these genetic diseases, and to the level that we are seeing impressive improvements, even patients being cured with some of these genetic diseases; this is unique. We believed it was far away and now it's here. And finally, we are seeing now the beginning of a new therapeutic area for neurodegenerative diseases, meaning there is the first approval for Alzheimer disease, and there is a lot of research on new therapeutics for Parkinson’s, ALS, and all the others – in the next 10-20 years we are going to see a complete change in how we manage and treat patients with brain diseases.” 

What are the main differences between neurological and psychiatric disorders?   

“From my perspective, nothing. And I think that many of my colleagues agree, not everybody, because there is a tradition of psychiatry and neurology. The difference, in practical terms,” explains Dr. Villoslada, “is that psychiatry is mainly about positive symptoms of brain diseases, meaning abnormal behaviors happens, imposed ideation, delusion, hallucinations, these kinds of things. Neurology is about negative symptoms. You lose motor, sensory, speech, and other functions. If you see the damage to the brain, this is neurology. If you see nothing because of the technology, this is psychiatry.” Neurology relies on psychiatry; psychiatry can become more precise with neurological advancements. “Now, when technology is advancing, we have a better resolution, and we can see more things; for this reason, we are changing definitions of decisions.” 

As digital health technology and the use of digital health technology to promote and deliver post-diagnostic care and neurological conditions are becoming increasingly common, what technology and approaches are you seeing that help improve the efficiency and efficacy of neurological disease management? 

Dr. Villoslada believes applications that aid in disease diagnosis and monitoring are effective at improving neurological disease management. “Education, coaching, these are two activities that can be delivered through, let's say, apps, websites, and maybe other systems – digital health system – that are beneficial for the patient because patients are desperate to have information, especially to personalize the information for their own case. Otherwise, you know, you may see information about very severe cases, and your case, maybe it's not so severe.”

Says Dr. Villoslada. “In terms of diagnosis or monitoring the disease course? Yes. In some cases, data health can help to monitor decisions in which you have a readout. For example, you can, let's say have an EEG recorder: you can monitor EEG in the same way that you record glucose in your Apple Watch. Or motor symptom monitoring during Parkinson's disease: how fast you move, the tremors you have, these kinds of things. Or fatigue and ambulation, meaning based on the level of your activity and to some extent your mood, and pain based on physical and cognitive activity.”   

How important is it to address fatigue in neurological conditions and how can tools that support both mental and physical fatigue and self-management help? 

“Fatigue is very important in multiple sclerosis, in chronic fatigue syndrome, which is now called Myalgic Encephalomyelitis, post-Covid, which more or less is the same thing. And in some other diseases it's important, but not as important.”

Dr. Villoslada gives greater context. Someone might be experiencing increased fatigue “after a stroke” or due to Parkinson’s, but because of their severe disabilities, fatigue isn’t a prominent issue. “But in the case of MS, it is so important because people may suffer severe fatigue, meanwhile they don't have an obvious disability, meaning they're able to walk and to play sports. But the main complaint is fatigue, and they're usually younger than other patients with brain diseases, meaning that yes, fatigue is pervasive among many neurological conditions in some of them. Because of the population and because the level of activity or the quality of life impact maybe is more prominent. In terms of how to address that, we don't have any treatment that works for fatigue. Meaning the only thing that we can do is provide some information, advise, and train people to self-manage their own energy to live with fatigue.” 

Have you worked with patients with MS or other neurological diseases who have used tools for self-management? And what is your experience with how that helped with fatigue for some of the conditions you’ve talked about?   

“You know, in the case of fatigue, most of the time I always refer patients to the National MS Society, or any MS society in each country because they provide information and advice. This information includes some PDFs or some other material that explains to them how to self-manage fatigue. Whether they're using apps or digital solutions, for that, I haven't seen this too much.” As Dr. Villoslada explains, people with MS are generally “more active on the internet or searching for solutions, meaning that if something is there, they’re going to be the first ones trying it. But I haven’t seen a single solution that everybody’s extremely pleased taking.” 

In clinical care, how important is it to have greater precision and more personalization of neurological disease treatment?  

“The first thing is efficacy in neurology because we in general don't have treatments. You know, in the case of MS or in the case of stroke, efficacy now has increased quite a lot. Meaning this is the time to discuss personalization and accuracy. But because we are talking mainly about MS. Yes, in this case, the treatment we use – some of them have adverse events, side effects, maybe they're expensive. With most of the drugs, they are not personalized, meaning you provide the same doses to everybody's therapy regimen. And we cannot predict these side effects, meaning that in this sense, any personalization is going to be very welcome by the patients, because this is going to help to improve their quality of life.” 

How important is it to support the family caregivers of individuals with neurological conditions like MS and especially caregivers of children with these conditions?  

“First, I will divide between pediatrics and adults. Of course, in pediatrics, the parents are everything, meaning you need to truly work with the patients and the caregivers altogether at the same time, at the very beginning.” Dr. Villoslada continues. “In the case of adults, caregivers are important because most of the disease produced disability, and so later the patient, is going to be depending on the caregiver… But this is something that you need to do early, meaning don't wait until your fifties.” Managing MS causes a lot of strain on relationships and is an extremely difficult road to try to take alone. “In the past, they used to say that 40% of patients are alone and they don’t have a caregiver anymore. Ok. We’ll have somebody help, meaning social services or MS societies, or something. This is the reason why working with the caregiver, with the partner in this case, for adults is important.” 

Why did you choose to be a member of the Adhera Health Board of Advisors?  

“Because I was very interested in digital health. Because I believe this is a technology that can provide useful solutions for my patients to improve their quality of life. And especially because of the level of personalization: the fact that Adhera Health uses this artificial intelligence system to develop these recommendation systems is something that I think is unique, and I haven't seen with other data solutions. I think it will be perceived highly by patients with MS.” 

Why Evidence-based, Integrated Digital Companions are the Future of Mental Healthcare

This interview with Rosa Baños, Ph.D, is part of a larger series of interviews where we discuss the intersection of healthcare and technology with subject matter experts from Adhera Health’s Advisory Board. 

Rosa Baños, Ph.D., is the most recent addition to Adhera Health's esteemed Advisory Board. A full professor of psychology at the University of Valencia, Rosa acts as the Director of the master’s program, “Multidisciplinary Intervention in Eating Disorders, Personality Disorders, and Emotional Disorders.” She has dedicated her career to the study of human psychology & disorders; her expertise is invaluable at Adhera Health as we address the bio-psychosocial factors that affect individuals afflicted with chronic conditions. 

What are some of the most pressing global mental health challenges that you see happening today? 

“There are really many, many challenges for this century,” says Rosa, “but if I have to choose two, I would highlight two that I think are very important. The first one is the access to psychological treatment.” Everyone deserves access to psychological treatment. “That one is a very important challenge. And the other is the prevention of mental disorders and the promotion of mental health.” As she explains, access to mental health care is a significant problem for people in both underdeveloped and developed countries. The barriers that exist are not only financial; a lack of healthcare infrastructure, limited numbers of health professionals, and “stigma” are all factors that limit an individual’s ability to get the care they need. 

“I think that another important problem is the increasing prevalence of some mental health disorders, especially depression, anxiety, substance abuse; the figures are really very alarming… the all-around stigma surrounding mental health sometimes prevents people from seeking help and hinders their ability to receive the appropriate care.” 

“And also, I think that treatments must be accessible, but also, we need treatments to be more available.” As Rosa explains, “That means we need greater integration between mental healthcare and primary healthcare, and also not only in the healthcare system but also into the daily life of the individual.” 

You mentioned access, could you talk about that a little bit more, is it a lack of access? Is that what you're referring to? 

“Yes, I say that because at least in Europe, more than 60% of the people with mental conditions don’t receive the appropriate treatment – we are talking about the first world, and we are talking about almost two-thirds of the population.” 

“I always say in conferences or even to my students, imagine that if we are talking about another problem, imagine we're talking about oncological problems, for instance, saying that we have evidence-based treatments. We have effaceable treatments for this medical condition, for instance, diabetes or cancer – but almost two-thirds of the population are not receiving this kind of treatment. Within that, what is happening? It is really a very big problem.” 

“And of course, sometimes it's because individuals don't know it is possible to recede this kind of problem. Sometimes people think that mental problems are something you must live with. You think that it's something about your weakness, it's not something that you can cope with in a successful way. This is one reason, of course. And of course, stigma is also another reason.” 

As for the solution, Rosa points to the need for a more flexible mental health care system and suggests a critical reevaluation of our current treatment delivery methods. She cited a paper from 2011 that echoes her belief, explaining that even if we increase the number of mental health professionals fivefold, we still won't reach all the people in need. 

 “And they say that this is because our mental healthcare system is based on a one-to-one system. You know, one professional, one patient. Maybe one family, maybe one couple, maybe one group, but not more than that. So, we need another kind of treatment delivery because only one-by-one, it is impossible to achieve and to reach all the people in need.” 

You've mentioned the difficulty of the one-to-one approach in mental health treatment. With the rapid advancements in artificial intelligence, do you think AI could potentially play a role in scaling individual mental health care? 

“It's a very complex question,” Rosa notes that AI can perform certain tasks with great efficiency. “If you need some [specific] information for instance… artificial intelligence can be a very good answer.” But to Rosa, AI is a tool, and updating systems doesn’t mean replacing human beings. “The answer is not technologies substituting psychologists, psychotherapists, or psychiatrists. The answer is complimenting both. That's the point.” Nowadays, as Rosa explains, when you’ve got an issue with your phone bill and you call the phone company, “you want a human on the other side of the conversation.” What seems uncertain is if there will come a day when we won’t mind asking a robot for help, and how long that might take. “I don’t know how artificial intelligence will develop in the next five years; I think it’s very difficult to envision how the future will be in this aspect.” Fortunately for us all, Rosa still has faith in human beings, at least for now, “I think at this very moment we still need humans.” She laughs. 

What do you think about the ways in which digital technologies (i.e., Calm or Headspace) are currently used in clinical practice to understand the mechanisms underlying mental health disorders? Are they providing meaningful mental wellbeing support? 

One of the advantages of digital technologies is their ability to promote accessibility, “for instance, with mobile technologies,” which have the potential to “make mental health resources more accessible to a wider population.” Practically all it takes these days to receive up-to-date health education is an internet connection, says Rosa. “The interconnection of treatments in daily life is very important; at this moment we have the model that if you have a problem, you have to go to a doctor's office or a hospital to seek help.” Rosa believes that emerging technologies have the potential to shift this model to one that provides individuals with greater context for their health. “This care model will change,” says Rosa, “we are in that moment.” 

These sorts of digital technologies have the advantage of “reaching many people and they are able to collect a large amount of data,” says Rosa. The bank of data helps clinicians and researchers to “gain insights regarding the underlying mechanisms of mental conditions. At this moment, we can monitor our patients in real time. We can track their moods, their behavior, and their physiological responses in real time. All this data contributes to a better understanding of the factors that influence mental health and wellbeing.” 

One problem that Rosa sees with many of the current mental health applications on the market is that they aren’t necessarily evidence-based – “they cannot fulfill the things they promise,” she says. “Most of them are designed by a well-intentioned engineer, but one with not a lot of knowledge about psychology because sometimes people think that psychology is common sense.” Rosa thinks these sorts of applications can be damaging. “Many of these apps or digital interventions don't have research data evidence behind them. And that is very dangerous.” These sorts of applications lacking proper evidence can break people’s trust, says Rosa. “The market, it’s very quick… even the digital advances are quick.” It’s true that it can take time for regulations to catch up to the science, Rosa explains. “It’s not easy.”  

Adhera Health hasn’t developed mental health-specific applications unlike other similar companies; we embed mental interventions within interventions for certain specific conditions. Do you think it would be more effective to have a separate application that would function solely as a mental health application? 

“I am more in line with integrated care,” says Rosa. “We cannot consider health without mental health. So, from this perspective, care must also be holistic and integrated. It's not, this is for my physical wellbeing, this is for my mental wellbeing, and this is for my social wellbeing. No, I think the social aspect, the psychological aspect, and the medical aspects must be integrated and interconnected.” Because their condition varies over a long period of time, individuals afflicted with chronic conditions must follow an adaptable program. Psychological support, Rosa notes, is an important aspect of such a program. Rosa understands the perspective of the physician; that they may feel they are only responsible for the department that they are an expert in. However, as Rosa explains. “It’s the same department. I am one person, and everything is impacting me.” Holistic care requires a level of integration. 

How would we engage in this integration in a way that would be more supported by clinicians, as they are ultimately the ones familiarizing patients with these new technologies? 

We need to hear from clinicians, explains Rosa. “They also have their own needs, worries, concerns, and limitations. Sometimes it’s a problem of training… I, a psychologist, always say that we work from a biopsychosocial perspective. I can't understand inner illness without taking into account the social factors, the psychological factors, and the biological factors.” As Rosa explains, an integration of different disciplines is necessary and challenging, but emerging technologies pose an interesting solution. 

How would you describe the difference between mental health and mental wellbeing, how are they interlinked? 

“Well, mental health is a broader concept that includes mental wellbeing. Currently, in clinical psychology and psychiatry, we recognize that mental health has two dimensions: one refers more to the pathological aspects, including mental disorders; the other refers to wellbeing in terms of flourishing and personal growth. And these are two different dimensions, two distinct dimensions. Just not feeling well does not necessarily imply having a mental disorder. Of course, these are two dimensions that are closely related and correlated, but they should be promoted separately.” Understanding the difference in these terms can offer us a “more comprehensive” understanding of our own psychological state. “It’s recognized that mental health is not the absence of illness, but also the presence of positive factors that contribute to our optimal functioning. We need to prevent mental conditions. And this means to identify and to cope with risk factors, and also to have access to appropriate treatment and intervention.” 

Rosa explains that we must be “fostering environments that support and care for people with mental conditions.” We must be promoting mental wellbeing, focusing “more on cultivating positive emotions” and building resilience through “positive relationships.” It isn’t just about avoiding risk factors, explains Rosa, it’s about creating a space to harbor sustainable personal growth, accountability, and commitment. 

Why did you choose to be a member of the Adhera Health Board of Advisors? 

“Why am I an advisor? Well because you were so kind.” Rosa laughs, speaking to the CEO of Adhera Health, Ricardo Berrios. “But really, I know the work you have done, and especially your sensibility to research.” For Rosa, an evidence-based approach is absolutely crucial. “I know a lot of digital companies that are developing apps very quickly for different things, and they're not interested in evidence. They're not interested in research.” As Rosa explained earlier, this can be dangerous. “For me, it's very great to work with people that are so responsible and so committed to ethics... this is a very important field,” says Rosa. As we all age, and as the average lifespan increases, addressing the chronic condition problem will become increasingly important. Rosa is proud that Adhera Health is addressing the problem with due diligence and passion. “I think it will be a successful future.” 

Gender Equality and Family Caregiving: Things Are a-Changin’ - Finally

Women’s Equality Day is celebrated every August 26 to mark the passing of the 19th Amendment that gave women the right to vote in the U.S. Well, most women. It didn’t include Native, Asian, or Black American women. That came later. 

Today, the day is about bringing awareness to the remaining obstacles to gender equality like achieving equal pay, enforcing equal participation, and gaining access to healthcare, which is considered a gender equality issue for several reasons ranging from barriers to accessing quality healthcare services to lack of education and awareness about health issues affecting women. 

What is Gender Equality in Health?

Gender equality and health are closely related concepts. According to the Pan American Health Organization, equality in health means:

• Women and men have equal conditions for realizing their full rights and potential to be healthy, contribute to health development, and benefit from the results. 

• Women and men have different needs, access to, and control over resources. These differences should be addressed in a manner that rectifies the imbalance between the sexes.

• Fairness and justice in the distribution of benefits, power, resources, and responsibilities between women and men.

That last bullet is what I keep coming back to – fairness and justice in the distribution of responsibilities between women and men. The question I ask is how are we going to do this when many roles such as family caregiving often fall disproportionately on women? In many societies, women traditionally take on caregiver responsibilities for family members, including children, spouses, parents, or other relatives.

What Happens When Family Caregiver Responsibilities Fall to Women

When most of the family caregiving responsibilities fall on women, there can be several significant implications, some of which are:

1. Economic Impact: Women who take on caregiving roles often face disruptions in their careers, leading to lower earnings, reduced career advancement, and fewer retirement benefits. This can result in long-term economic disadvantages for women and contribute to the gender pay gap.

2. Work-Life Balance: Balancing caregiving responsibilities with work commitments can be challenging for women, leading to stress, burnout, and difficulty maintaining a healthy work-life balance.

3. Health and Well-being: The physical and emotional demands of caregiving can negatively impact women's health and well-being. They may experience higher levels of stress, depression, and other mental health challenges due to the pressure of caring for family members.

4. Interpersonal Relationships: Strained caregiving situations can lead to tension within families, affecting relationships between spouses, siblings, and other relatives.

5. Policy and Support Gaps: Societal norms that place caregiving on women can lead to insufficient support structures and policies. Adequate parental leave, flexible work arrangements, affordable childcare, and caregiver support services may not be readily available.

One major theme in the above issues is stress: economic stress, work-life balance stress, physical stress, and interpersonal stress. 

Caregiving is Stressful – My Personal Experience with Family Caregiving

Caring for a family member can be highly rewarding, yet it also comes with significant stress. I speak from personal experience, as I am familiar with the role of a family caregiver. In 2006, both my parents became ill, and it was clear they needed live-in support. Although my brother lived closer to them and was single, my parents expected me to provide care. Please don’t get me wrong. I was perfectly willing to take care of my parents and happy to do so but it never occurred to them to ask my brother. My parents were born in the 1930s and grew up in the 1950s, and well, let’s just call them a bit old-fashioned about gender roles.

So, I said goodbye to my two little girls and husband to move in with my parents who lived over 2 hours away. Luckily, my job allowed me to utilize the Family and Medical Leave Act which provided for my family while I was gone, and secured my job for when I came back. Sadly though, a lot of women do not have that available to them.

While caring for my parents, my stress went through the roof. My mother, who was paralyzed from the chest down, was on at least 10 different medications and had a different doctor’s appointment every week. Understanding and managing her meds was the first big hurdle because every doctor we visited needed to know what she was on and why (this was before the widespread use of electronic medical records). She had bed wounds that needed to be attended to every day and it was imperative she get out of bed and into her wheelchair every day, which caused a lot of physical stress.

My father was in better shape, but our relationship, which was already a little rocky, was even more strained because I wasn’t attending to my mother like he wanted me to. I missed several of my daughter’s school functions and sporting events, which really taxed my husband because he became a single parent overnight.

My health and well-being suffered because it was no longer a priority. My only focus was keeping my parents healthy. I took care of my parents for two months. Fortunately, my parents were able to afford outside help, so I found two professional caregivers to take care of them in my absence.

The Number of Family Caregivers is Increasing

My caregiving experience with my parents was temporary. However, a recent study by the National Alliance for Caregiving, found that the number of full-time family caregivers caring for an adult or a child with special needs in the U.S. increased by 9.5M in five years (from 2015 – 2020) to total 53M. The study also revealed that family caregivers are in worse health compared to five years ago. As the demand for caregiving rises with an aging population, more must be done to support family caregivers.

There are Things We Can Do to Support Family Caregivers

At the beginning of this article, I asked how we are going to create fairness and justice in the distribution of responsibilities between women and men when many roles such as family caregiving often fall disproportionately on women. In the spirit of Women’s Equality Day and bringing awareness to gender equity, here are a few ways every one of us can help family caregivers:

• Provide resources, education, and support for women caregivers to prioritize their own well-being.

• Implement comprehensive caregiver support services to alleviate the burdens of caregiving.

• Raise awareness about the physical, emotional, and economic toll of unequal caregiving roles.

• Advocate for policies that support work-life balance, parental leave, and flexible work arrangements for all caregivers.

• Encourage open discussions within families about caregiving responsibilities and promote equitable distribution.

• Promote the involvement of men in caregiving roles and celebrate their contributions.

• Recognize and value caregiving as a vital societal function, regardless of gender.

The Family Caregiving Revolution Has Begun

I am extremely encouraged that things are changing for family caregivers. In fact, recognition of family caregivers has never been higher at the national and state levels. In September 2022, the U.S. Department of Health and Human Services released the 2022 National Strategy to Support Family Caregivers, which highlights nearly 350 actions the federal government will take to support family caregivers. It also listed 150 actions that can be adopted at other levels of government and across the private sector to build a system to support family caregivers. It recognizes that family caregivers provide most of the long-term care in the U.S. and lack the resources to maintain their health, wellbeing, and financial security while providing crucial support for others.

The Centers for Medicare & Medicaid Services is finally recognizing that family members caring for adults and younger people are the backbone of our long-term care system. For the first time, Medicare will pay doctors and other providers to deliver critical support to the families of people with certain chronic conditions. 

These actions mean better support for family caregivers. It gives them the respect they deserve which will improve the wellbeing of not just caregivers but their families too. It is a giant step towards gender equality.

Adhera Health – Mid-Year Milestone Review

As we forge onward into the second half of this year, we wanted to take a moment to recognize some of the milestones Adhera Health has already achieved in 2023. From research awards to new partnerships, this year’s success has energized us – we are excited to continue building meaningful relationships, gathering more data, and working diligently in the pursuit of helping those affected by chronic conditions. Here are some of our accomplishments so far this year:

Received Silver Award from AcexHealth Accelerator

Back in February, during the Second Edition of the AcexHealth Accelerator Investor Day, Adhera Health received the Silver Award for the Digital Health Sector. This award was given to us because of our success in the AcexHealth Accelerator program where we featured the Adhera Precision Digital Companion™, an adaptive self-management platform that uses an AI-driven recommender system to address mental and physical fatigue in people with chronic conditions and their family caregivers. AcexHealth is a health technology and business accelerator in Andalucia, Spain. This award is evidence of our progress and inspires us to set even higher standards for ourselves. To learn more about AcexHealth, visit https://acexhealth.com/

Clinical Partner Received Digital Rheumatology Award

In May our clinical partner, Dr. Diego Benavent Nuñez, received the Digital Rheumatology Award from the Digital Rheumatology Network (DRN), an international community for digital solutions in Rheumatology. The DRN’s lead sponsor is Pfizer, and its co-sponsors include AbbVie, Merck & Co, GSK, and Eli Lilly. “The award is given to scientists for innovative master theses, dissertations, or publications in the field of digital rheumatology.” Dr. Benavent Nuñez, a pediatric endocrinologist, received the award after presenting the results of a recent study assessing the impact of the Adhera Rheumatology Digital Program in Rheumatic and Musculoskeletal diseases at the American College of Rheumatology Annual Meeting. Read more about the study: Study Featured at ACR Convergence 2022 Demonstrates Strength of Adhera Health's Rheumatology Digital Program in Supporting Rheumatic and Musculoskeletal Patients Self-Management and ePROs Monitoring

New Partnership to Improve the Health of People with Type 2 Diabetes

June was a busy month – on the 15th, Adhera Health and Universidad Veracruzana announced a partnership for a clinical study to further validate our Adhera Fatigue Digital Program’s capabilities to improve the self-management of people with type 2 diabetes and thus their glycemic control, in a non-invasive manner. These partnerships with hospitals and universities are important as they enable us to evaluate the efficacy of our treatments; clinical validation is invaluable and will distinguish Adhera Health’s digital programs from others that may seem similar. Also, nothing is more valuable than hearing feedback from patients directly. We want to help as many people as possible, which is why we will continue working as hard as we can to create solutions that make a real difference. Read more at Adhera Health and Universidad Veracruzana Announce Partnership in a Clinical Study to Improve Health in Type 2 Diabetes (einpresswire.com)

Unveiled Adhera Caring Digital Program for Type 1 Pediatric Diabetes at ADA

Later in June, Adhera Health’s Chief Scientific Officer, Luis Fernandez-Luque, PhD, presented a poster at American Diabetes Association’s 83rd Scientific Session, in San Diego, California. The poster was titled, “Digital Health for Self-Management and Psychoeducational Support of Caregivers of Children with Type 1 Diabetes – A Feasibility Study.” We are glad to have had the opportunity to present at the ADA, and we hope to continue inspiring and learning from our peers; we also look forward to establishing new relationships and making new friends on our path to innovation. Read more at Adhera Health to Present its Adhera Caring Digital Program Study 1 Results at the ADA 83rd Scientific Sessions

There’s more to look forward to in 2023 from Adhera Health; we are accelerating, and we don’t plan on slowing down anytime soon. We look forward to providing you with updates as we reach new milestones; keep an eye out for us. Cheers to a fruitful rest of the year!

Building Around the Individual, Not the Disease – Part 2

This interview with Jonathan Anscombe is part of a larger series of interviews where we discuss the intersection of healthcare and technology with subject matter experts from Adhera Health’s Advisory Board.

Jonathan Anscombe is the newest addition to Adhera Health's advisory board. Jonathan spent an impressive 30-year career at Kearney, the leading global management consultancy firm. As the former head of the Europe and Middle East healthcare practice at Kearney, he guided major healthcare and global pharmaceutical companies on topics related to digital transformation, digital solutions, product launches, and service redesign.

Jonathan's expertise further extends to areas including population health management, healthcare payment and delivery, system reform, and the social determinants of health.

In this second part of the interview, we continue where we left off in Part 1 and explore the importance of digital health personalization and evidence-based solutions. 

True Personalization and Differentiating Between Existing Digital Health Solutions

“One thing that I think virtually all of these [digital health] applications have struggled with is true personalization.” In the past, Jonathan had done research on compliance and whether people miss their medications. “Somebody who forgets to take their Atorvastatin on Saturday morning will also forget to take their cancer medications on Saturday morning. It's not a function of pill, it's a function of person.” Medical non-adherence for patients with chronic conditions is well-documented; studies indicate that a high rate of non-adherence (~40-60%) exists among patients with chronic conditions.

“Adhera has a particular capability around fatigue… which virtually nobody’s talking about, yet it is a function of many of these [chronic] diseases, particularly the more acute ones, cancer and some of the autoimmune diseases, and a major driver of non-adherence.”

As Jonathan says, a comprehensive approach across multiple conditions is necessary for these applications to find success. However, he feels that a lot of the current digital health applications miss the mark. “I think quite a lot of the applications are very focused on the clinician interaction, and that's great, but they miss out on the carer. And those carers can be parents when the patient is a child or young adult, they can be children when patients are older, they can be spouses, they can be colleagues or other health professionals.”

There is great importance in engaging those “nearest and dearest in the care of that individual. It becomes absolutely central that the caregivers and loved ones are engaged in that process. And I will speak about this from a very personal experience with both my parents.” Jonathan has seen firsthand that there are no current technologies that focus on caregivers, “I mean nothing…The only time I've ever felt myself starting to struggle with mental health issues is when both my parents had dementia, and sometimes the pressure on me and my family was unbearable.”

Adhera Health’s focus on supporting caregivers is a piece of the comprehensive approach that is excites Jonathan. The “ability to handle complex comorbidities as well as issues related to the patient’s specific context comes out naturally because with Adhera we are building around the individual, not the disease.” The evidence is there,” explains Jonathan, “there are numerous studies that you could refer to in terms of the importance of these relationship factors, yet there isn't any kind of solution that is able to address them head on.”

Breaking From Traditional Models

“We know that we can reverse diabetes, even those who have progressed to requiring insulin, with behavioral change, with increasing exercises supplemented with a protein-rich diet, with the right mental health support. Type two diabetes is recognized as a disease of inappropriate behavior and addressing that behavior can resolve the disease.” What is less known, explains Jonathan, is “the fact that you can have much better outcomes across a wide range of diseases, cancer for example, if people have the right mindset and mental resources.” Most leading clinicians will accept that certain diseases are behaviorally based, “what is not yet been so clearly understood is the importance of those same factors around other diseases.”

Jonathan references the microbiome research of ZOE, a UK company that analyzes an individual’s gut microbiome, blood fat, and blood sugar responses to generate a dietary plan that is ‘tailored to your biology.’  Regulating microbiomes has a huge impact on a wide range of diseases. “There are these emerging areas of science, but still much of the medical profession is quite traditional, focused on the apparent problem and not taking account of more holistic issues”.

“I'm not sure that every clinician is convinced that engaging people in their own healthcare is really important for a health outcome. You're always going to have skepticism because with limited resources there is a huge pressure to process people as quickly as possible to move on the next patient.”

This is why it’s so important to provide incontrovertible evidence that a solution is both clinically tested and cost-effective. “I did a little work some time ago for the mobile phone industry,” says Jonathan, “it was called mobile health: ‘Who Pays?’, and the basic essence of it was: look, if we can prove that better patient engagement, leads to better health outcomes, leads to lower costs, then what you need to do is talk to the person who pays the bill. That is not usually the clinician.”

“The relationship between the patient and clinician is often quite transactional. The person does not exist before they walk into their consulting room. And [they] no longer exist the moment once the intervention and follow-up is complete. Now, for diabetes, it’s different because they are going to have the patient for the next 15 years.  In contrast, “for an orthopedic surgeon repairing a knee, the treatment process lasts for a few weeks, and that's the entirety of the relationship.”

“So, there's a real different mindset here, you know, and if you're going to have a successful business, it's well worthwhile not predicating that on changing the medical mindset because it's kind of going to take quite a long time.” Jonathan says, laughing. “But, what you can do is you can think about ‘what evidence do I have that this is effective, and over what timescale?’ Who ultimately has the financial interest in this being effective? So the question is: am I selling to an insurance company or to a hospital? And I'm probably selling to the insurance because they're the people with the long-term interest.”

“However, probably the most important actor in the long term is the patient. If the patients like a solution so much that they prepared to take that into account in their choice of health plan or health provider”.

“So, anybody providing solutions to address these longer-term health outcomes needs to work at multiple levels. They need to persuade the treating health professional that the solution delivers better health outcomes without unduly increasing their workload. The solution needs to make commercial sense to the person who's got a financial interest in keeping this person healthy for a long period of time, which is generally the insurer; though I said, the problem with an insurance system when you move around is they often don't have a long-term view. And finally, you need to have a solution that is valuable to the patient who will then say, look, this has been helpful to me, and I'm not particularly interested in working with somebody who doesn't continue to provide that to me.”

Time to Talk about Family Caregiver’s Mental Health

May is Mental Health Awareness Month, a national movement to raise awareness about mental health. One of Adhera Health’s mantras is “There is no health without mental health” because mental health is so incredibly important to general wellness. 

Over the past year, our clinical and technical teams have been working closely with healthcare providers, individuals with chronic conditions, and their family caregivers designing and implementing adaptive self-management digital programs that improve the overall health and wellbeing of both the chronic-care patient and their family caregiver.  

Since this is Mental Health Awareness Month, Adhera Health wants to bring awareness to the mental wellbeing of family caregivers, who are often forgotten.  According to the CDC, nearly two-thirds of unpaid caregivers of adults reported adverse mental or behavioral health symptoms.  In addition, 27% of parents of children under 18 reported their mental health had worsened during the COVID pandemic. 

This is a major problem because research has shown that a family caregiver's health can affect the entire family and impact the individual's health outcomes. Specifically, the mental wellbeing of parents taking care of a child with a chronic condition has been associated with less effective parenting and poorer disease management. 

This is why it's important to provide a comprehensive therapeutic approach to chronic care patients that must include addressing the physical and mental wellness needs of family caregivers. 

The good news is that digital tools have been shown to help with self-management, education, and coaching support to reduce a family caregiver’s depression, stress, and anxiety. 

“ Caregivers want to feel heard, and supported and that their doubts are resolved as soon as possible,” said Silvia Quer, Palomas, PsyD, Adhera Health Digital Health Research Associate who’s worked directly with family caregivers in several clinical trials. “Usually a medical consultation has a short duration, where the goal is to deal with chronic disease. However, when the patient and caregiver come home and encounter everyday situations involving the chronic condition, it is the moment when doubts, fears, anxiety, and stress assault.” 

This is the moment when digital programs have their greatest prominence.  The family caregiver can open the app, and get information related to their physical condition as well as tools to manage the disease. When negative feelings appear, the family caregiver finds highly personalized self-management tools to deal with their mental wellbeing.  All this support brings peace of mind and increases self-esteem and self-confidence. 

Family caregivers need training, support, and reminders of self-care to improve their health, wellbeing, and overall quality of life.  When this happens, the health-related quality of life improves for everyone in the family, and digital health tools and programs can help with this. 

Contact us to find out more about how Adhera Health empowers family caregivers of individuals with chronic diseases.

Resources 

Stress and caregiving (apa.org) 

Mental Health Among Parents of Children Aged less than 18 Years and Unpaid Caregivers of Adults During the COVID-19 Pandemic — United States, December 2020 and February–⁠March 2021 | MMWR (cdc.gov) 

Building Around the Individual, Not the Disease – Part 1

This interview with Jonathan Anscombe is part of a larger series of interviews where we discuss the intersection of healthcare and technology with subject matter experts from Adhera Health’s Advisory Board.

Jonathan Anscombe is the newest addition to Adhera Health's advisory board. Jonathan spent an impressive 30-year career at Kearney, the leading global management consultancy firm. As the former head of the Europe and Middle East healthcare practice at Kearney, he guided major healthcare and global pharmaceutical companies on topics related to digital transformation, digital solutions, product launches, and service redesign.

Jonathan's expertise further extends to areas including population health management, healthcare payment and delivery, system reform, and the social determinants of health.

In Part 1 of this interview, we explore global healthcare system challenges, the management of chronic diseases, and the role of digital health solutions as a bridge between patients, payers, and providers.

What do you think are some of the most pressing global health challenges that you see happening today?

“Global health challenges vary somewhat depending on the wealth of the country. The majority of the world's population doesn't even have access to what we in the developed world would regard as any kind of basic healthcare. Infectious diseases is still a huge problem and a quarter of the world’s population still does not have access to clean drinking water. Tuberculosis is endemic in much of the developing world.”

“In the developed world…. the biggest burden is chronic disease, particularly associated with obesity.”

In the U.S., the CDC has found that chronic disease accounts for seven out of ten deaths each year; chronic care treatment represents a massive expenditure of health care costs. Looking to the future, Jonathan believes Alzheimer’s and Dementia pose a great burden to global healthcare systems. “I don't think I have seen any country really come up with a view about how it's going to deal with that.”

“Things like cancer and heart disease maintain a big share of mindset and a huge amount of expenditure, particularly in the U.S. And rather surprisingly, there seems to be more progress being made on cancer, particularly with RNA vaccines, potentially than dementia, though some of the latest drugs are promising.”

What technologies have you seen over the years that truly address the health challenges you mentioned?

“The technologies in the developing world, I think, are probably in many ways more interesting than in the developed world.” Because of a shortage of healthcare professionals in the developing world, “simple applications, for example, basic health information around preventing infant mortality, the leading cause of mortality in poor countries, can have a dramatic impact on the lives of people.”

“In terms of the developed world, I think most of the big technology-driven breakthroughs have been in diagnostics. Scanning technologies and genomic profiling of cancers for example. Diagnostic AI is starting to have an impact. Obviously, we've got really interesting stuff about gene editing coming through, but it's still massively expensive and a long way from mass deployment.”

“What we haven't really seen yet is the widespread use of technologies for remote monitoring and patient support, despite solutions being available for a long time. There are all sorts of reasons for that; difficulty in proving effectiveness, reimbursement and payment systems, patient attitudes, and vested interests. So although there are a lot of technologies around that [remote monitoring], their uptake is probably not as high as you would've thought given the technology base we have.”

What are some of the common mistakes health insurance organizations made when they were trying to transition to digital health technologies?

“There are similar challenges in virtually every healthcare system. One of the most significant barriers has been the nature of proof. Do technologies actually work? And I did quite a lot of work for a variety of different parties looking at that.”

“The way health systems look at proof is rooted in pharmaceuticals. I have a chemical agent and I have a disease and I show that this particular agent has this impact on the disease within a controlled environment.” When you’re talking about remote management for chronic disease, “it’s not as straightforward… you have multiple variables, and the environment is uncontrolled. The performance of that technology is very highly varied between individuals and contexts and companies really struggle to get proof that it works consistently.”

 “If you can't get proof that it works, you can't get reimbursement; if you can't get proof that it works, doctors won't prescribe it.” Jonathan continues.

Another big area of concern is incentives.  “I think one really, really critical question with these technologies is: who do they financially benefit?”

One of the problems with an insurance-based system where patients can change between providers, Jonathan says, is that “virtually all of the kinds of really interesting technologies around chronic disease only manifest their outcome over many, many years.”

“In a traditional insurance-based system the focus is on controlling cost: I've got a sick person, so I have to try and find the cheapest way of treating them. Now, in European-style social healthcare, or if you are an integrated system like Kaiser who also has the provision as well as their healthcare plan, and [who] tends to have people for a long time, the economics can work a bit better.”

What is the interaction between Adhera Health and pharmaceutical companies?

“I was doing a lot of work around digital patient solutions… the most active players in this are actually the pharmaceutical companies because virtually all of the treatments they have require some kind of behavioral change on behalf of the patient, even if it's just to try to get them to take their medications on time.” says Jonathan. “The biggest mistake for pharma is very clear, it is that they tend to create solutions around the drugs they're selling at that moment in time. That is pretty useless from the perspective of a healthcare system.”

“If I'm a healthcare system, I'll say ‘I'm not interested’, because I've got thousands of patients and they're on hundreds of different therapeutic combinations. Why would I be interested in taking an application which only works with one particular drug?”

 Jonathan believes these solutions struggle to be successful because they don’t “apply to all the patients in the cohort.” Not only that, “they don't really have any way of getting that information into the patient record where it's going to be stored and be useful over a long period of time.”

“I was helping to develop products for pharma companies and healthcare systems would not take them for free. They're just more trouble than they're worth.” He continues, “the idea that a healthcare provider would have 20 different apps from different pharma companies: what a complete nightmare! There is a real fundamental issue here for pharma companies as they create ‘beyond the pill’ solutions.” 

“If they are dominant leaders and they've got a small, controlled population like a specific cancer, it's fine. But as soon as you get into COPD, heart disease, and diabetes, most of the people are co-morbid, and can shift between therapies, these kind of very therapy focused apps just don't really work.”

Jonathan says that essentially all supportive digital applications, in the context of pharmaceutical interventions, are associated with behavior change. “If you have tried to recover from a cancer operation, or you've got diabetes, or you've got COPD or indeed most other serious conditions, you actually have pretty much the same types of interventions that you need to do with the individual… they need to eat well, they need to exercise, they need to be informed about the disease. They need to be mentally engaged. They need to not be depressed. And, all of those things apply, but all of those are not features of the disease, they're features the person.”

“ The reason why Adhera Health is such an interesting platform and the reason why I agreed to come on the advisory board is that there is no reason to produce multiple different apps to support multiple different diseases… what you really need to do is have a single platform that is patient-focused, where you can tailor the kind of interventions you’re doing to the particular disease or set of diseases.”

— Jonathan Anscombe

 “I think that's where the interest in someone like Adhera Health comes; you can use the same platform regardless of the disease or set of diseases that the individual is suffering and regardless of the specific pharmaceutical intervention you are using at that time. The patient can become familiar with the system, and you only have to do one integration with the healthcare record.” This simplification and unification of data creates transparency between payers and providers; “the neutrality of the platform, the transparency of the platform over a long period of time, that potential makes Adhera so interesting.”

 “One consistent set of notations – the ability to review  patient data over a long period of time and take some sensible decisions on that basis… if you can move between insurance companies as well, you're seeing something that is much more like the integrated care record that you might some find, for example, in the U.K, which is neutral to provider, to individual, to therapy, and everything else.”

“By partnering with healthcare providers, Jonathan says Adhera Health provides “a neutral source of useful, consistent interrogatable and analyzable data on the individual that can be used by that individual, by their carers to try and generate some good long-term health outcomes.”

Ultimately, the data “has to reside with either the healthcare provider or the healthcare insurer or the health plan, or preferably in some format that's accessible by all of the above plus carers.” By partnering with healthcare providers, Jonathan says Adhera Health provides “a neutral source of useful, consistent interrogatable and analyzable data on the individual that can be used by that individual, by their carers to try and generate some good long-term health outcomes.”

Click here for Part 2 of this interview.

‘Leveling the Playing Field’ with José Pagán

This interview with Dr. José Pagán is part of a larger series of interviews where we discuss the intersection of healthcare and technology with subject matter experts from Adhera Health’s Advisory Board.  

Dr. José Pagán is a professor and health economist; he has spent his career understanding healthcare delivery and payment systems, leading research, implementation, and evaluation of healthcare delivery and payment projects. His expertise in population health management, healthcare payment and delivery system reform, and the social determinants of health has led him to a chair position at the Department of Public Health Policy and Management in the School of Global Public Health at New York University, as well as chair on the board of NYC Health + Hospitals; he is a former Robert Wood Foundation Health and Society Scholar, and was elected last year to the National Academy of Medicine. We were elated when Dr. Pagán joined our board of advisors because of his impressive skillset, experience, and values. This month, we conducted an interview to help you understand why Dr. Pagán’s expertise is so valuable to the work we do at Adhera Health. 

Adhera Health and Dr. Pagán know the importance of access to care. It’s a primary reason why Dr. Pagán pursued a career in public health.  

Making the Business Case for Public Health Interventions

“I’m interested in, ‘how do we improve access to care?’ How do you increase health insurance coverage? How do you make sure that people get the care they need?” said Dr. Pagán. “And a big component of it, of things that improve health, are not connected to the healthcare delivery side, but they're more social and behavioral factors. And public health gets into that, you know, how do you focus on prevention? How do you improve health so that you don't need as many clinical interventions as people may think they need?”  

“As an economist, I do work on showing the business case for a given program. And public health is a perfect place to study that because you lose something that prevents something into the future. A lot of the work that I've been doing applying economics to public health is around this issue of making the business case for public health interventions that may matter and that are difficult to pay for. For example, if you help someone manage their diabetes or manage their hypertension, the benefits you see are way into the future… The behavioral aspects of chronic disease management are incredibly important.” 

As Dr. Pagán said, by focusing on prevention we can avoid future healthcare costs – this relates to Adhera Health’s adaptive self-management programs. Through digital programs, we’re able to improve self-management behaviors for both family caregivers and patients, offering constant, personalized support and education, leading to better future health outcomes, fewer interventions, and therefore lower healthcare costs. 

Measuring Health Disparities is Essential to Advancing Health Equity

“Everybody should have access to equitable high-quality care. That's incredibly important. As human beings, as a social justice issue, that's really important. There is research work that I've done where I've looked at communities that have, for example, some people with some access to care, and others that don't have access to care. And it turns out that you have a stronger healthcare system in your community if everybody has access to care. So, it's not only because it benefits individuals, it's also because it benefits society and our communities to have systems of care that take care of the whole population in your community.” Dr. Pagán’s research demonstrates that a strong healthcare system involves the inclusion of all individuals. And he argues that health systems are already moving in a more inclusive direction. 

“They want to make sure that they provide care to everyone, and they're developing systems to track that information. And the reason they're doing it is because they understand the importance of it, in terms of how to keep the whole population healthy, not just one segment of the population.” The future of health systems relies on providing equitable care to all.  

Policies have been implemented to reduce or even eliminate health disparities to attain health equity. Despite these policies, chronic conditions such as diabetes, cancer, and mental health issues, among others, remain prevalent across disadvantaged populations compared to the majority (Williams et al., 2016). Measuring health disparities is essential to advancing health equity and Dr. Pagán knows this. 

“I use economic models and tools to show: this is the health pathway of someone that has diabetes and, because you have it under control, you prevent the foot amputation or you prevent somebody from going blind. This is how much you may save in the healthcare delivery system in terms of hospitalizations, emergency department visits,” said Dr. Pagán. 

Providing and Receiving High-Quality Care Relies on Health Literacy

As we look toward the future of healthcare, it’s easy to envision the power of digital tools in reducing healthcare costs. Adhera Health’s research has provided evidence of the effectiveness of personalized digital programs in their ability to improve the mental wellbeing of patients and their family caregivers, improving treatment adherence, and leading to better health outcomes.  

Dr. Pagán’s perspective aligns with the Adhera Health vision: using science and real-world data to create evidence-based programs that improve the quality of life for both patients and their family caregivers. Now, as an advisor for Adhera Health, Dr. Pagán is making the case for Adhera’s own adaptive self-management application. 

An important aspect of Adhera’s highly personalized digital programs is their ability to educate the user. By utilizing observed and reported user behavior, the AI-based recommender system offers interventions and personalized recommendations. Through education, family caregivers and patients can develop skills to better self-manage their conditions and improve their lifestyles. 

Dr. Pagán has spent time studying the effects of health education/health literacy on different populations, including the effects of health literacy and breast cancer screening among Mexican American women in South Texas, as well as the impact of community diabetes education.  

“Being able to consume information about your health is critical.” Dr. Pagán said. “It's also important because when you go receive health services of any type in any system, you need to understand, for example, how a piece of advice for a given drug or a given treatment is going to impact you... For anybody to be able to follow advice, they need to be able to understand the information that is provided to them. And so, health literacy is critical to be able to provide and to be able to receive quality high-quality care.”  

The Adhera Health vision involves helping individuals all over the world through health education and recommendations. In this sense, health literacy is a huge part of what makes the work Adhera Health is doing so important. Through personalized recommendations and education, users can understand exactly what they should be doing for their specific needs in real-time and improve their health literacy. With our adaptive self-management platform, we have the potential to change lives all over the world. 

“Being able to have tools and technology platforms that allow for better communication between health systems, patients, providers – any tool that sort of like facilitates that, any tool that empowers the patient or empowers a person to take care of their health – whether it is somebody with cancer that is undergoing treatment or somebody that is trying, for example, to manage their diabetes or hypertension, or mental health issues, or whichever aspect that you can think of – those tools, I think that is what a lot of people need.” As Dr. Pagán says, the digital aspect of adaptive self-management makes things interesting because it offers a larger reach, and impact, and “…you also have data so that you’re able to manage patient populations.” And with more data, these systems can become more advanced. 

As we continue to look for digital and human solutions to empower individuals with chronic conditions and caregivers to live healthier lives, we are confident in the future of Adhera Health because of skilled advisors like Dr. Pagán that will help guide our vision. His expertise in understanding health systems is invaluable, and his passion for health equity aligns with Adhera Health’s principles. 

“Tools that sort of like, level the playing field, for lack of a better term – tools that allow people with different languages or different educational levels and different levels of health literacy – that allow everyone to be able to meet them where they are at and provide the information that they need, are critical.” – Dr. José Pagán.

Dr. José Pagán (bottom), Professor/Chair, Department of Public Health Policy and Management, School of Global Public Health, New York University, speaking with Ricardo C. Berrios (top-left), Adhera Health CEO and Shannon McGinley (top-right), Head of Marketing on January 27, 2023

How Setting Goals Shapes My MS Journey

This year marks the 20th anniversary of my MS journey. Twenty years ago, the vision in one of my eyes became temporarily blurry, and it was the first relapse. After the second relapse the following year, when I became numb on the left side of my body, and after a series of tests, I was diagnosed with Multiple Sclerosis (MS) by a very kind young female neurologist in a local hospital in Finland. It’s one of those moments in your life that you’ll always remember and the fear of an unknown future that lingered for years.

Multiple Sclerosis is a chronic neurological condition where the nerves don’t work the way they are supposed to. This means that the messages from the brain don’t always reach the body. Many people with MS look normal and healthy, but many also need a wheelchair to move around, because their legs don’t receive the message from the brain on how to walk.

Looking back at those moments now makes me realize how fortunate I am, because it has turned out that my MS is not one of the aggressive forms. However, there is one main symptom that affects me the most in my everyday life, which is fatigue. Fatigue also contributes to another symptom which is sensitivity to light, sound, and smell. For example, if I am in a noisy place with lots of different sounds, I start to feel very tired. But if I step outside or find a quiet spot for a while, the tiredness tends to go away. The same happens in a place with very strong smells.

Tracking Physical Activity to Help Manage Fatigue

It has been scientifically proven in many studies that physical activity and exercise are the best medicines for fatigue and overall mental health. The problem that I’ve encountered during the years after visiting many neurologists, in different hospitals and in several countries, is that they are not experts in the field of physical activity and are unable to recommend anything regarding it, so I was on my own to figure this out.

I got my first smartwatch in 2017. First, I wanted to see how much I moved each day. Once it was clear that I didn’t move nearly as much as the recommended 10,000 steps daily, I started using the smartwatch as a “personal trainer” to reach the daily goal of 10,000 steps. However, after months of use, I realized I never reached that goal, and it was frustrating. I started to blame the watch and that it didn’t track all the steps I took, so I got another smartwatch. For a while I wore two smartwatches, one on each arm, to see the difference in their readings. It was true that the first smartwatch didn’t calculate all my daily steps. I guess it had something to do with how I move (or in this case don’t move) my arms when I walk, but still, I wasn’t even close to 10,000 steps daily. After a while, I completely lost my motivation and gave my smartwatches away to friends.

There are many kinds of smartwatches and many manufacturers, but most of them are aimed at professional or semi-professional athletes. It’s really demotivating for a person with a chronic condition to use the predefined programs for athletes and never reach the goals, no matter how motivating the messages from the watch might be.

Using Adaptive Self-Management to Reach My Goals

People like me need activities that are adapted to our abilities and smartwatches that can be either fully personalized when setting goals, or that can have the goal feature turned off so that it’s only used for tracking. This concept took me years to grasp and understand. It’s called self-management, which means I understand and take personal responsibility for my own behavior and wellbeing. Or even better – adaptive self-management, which means I can adapt according to how I feel, the weather, or the circumstances around me.

My personal goal is to exercise (as much as I can OR at least a little) but often – to make it a habit. Some days are not as good as others, but if you can achieve at least something little every day, then it’s a win. It’s OK if you miss one of your swimming lessons, but it’s NOT OK if you miss two lessons in a row. Then you’re losing the main goal of making it a habit.

It takes self-discipline to change your own behavior and improve your self-management. But no one said it was going to be easy.

I started horseback riding a year ago. I’ve never in my life been in any contact with horses before, but I figured I’d give it a try. It looked so easy. To be honest, I fell in love with the sport after the first try. Being outside, in close contact with an animal that moves in a way that can be quite unpredictable sometimes has improved my balance, my mental wellbeing, and overall fitness, while reducing my fatigue level. Of course, I don’t go as fast or as eloquently as the younger people in the more advanced group, but I do my best (depending on whether I have a good day or not) in a small group with my teacher, who has been supportive. I’ve also learned my limits from the times I have fallen off the horse.

My goal is not to compete one day in a competition or to do it as a living. I do it for myself and I’m fortunate to be able to spend money on activities that help with my health and wellbeing.

My Journey Inspired Adhera Health

The good news is there is help for people who want to take responsibility for their health journey. That’s why I’m so proud to be part of Adhera Health, which is committed to empowering people with chronic conditions like me to live healthier lives. The scientists and technologists at Adhera Health (one of them my husband) have developed the Adhera Precision Digital Companion, which is an adaptive self-management platform that delivers highly personalized programs.  The platform combines an AI-based health recommender system and content using real-world data that offers interventions and personalized recommendations based on observed and reported user behavior that helps people like me develop skills to better self-manage their condition and improve their lifestyle.

A major part of Adhera Health Digital Programs is setting goals. It is so important – it's what keeps me honest. It allows me to try new things and never give up. I’m grateful every day because after 20 years, I’m still in the stage of “invisible disease” – I walk without aid, I have a career, and a family with kids. Some days are great, some days stink but knowing it’s a journey helps. It reminds me of the famous quote “When you fall off a horse, get back on” and that’s exactly what I do.