Building Around the Individual, Not the Disease – Part 2
Building Around the Individuals, 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
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
Building Around the Individual, Not the Disease – Part 1
Building Around the Individuals, 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.”
“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
‘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
How Using Adaptive Self-Management to Set and Reach Goals Has Helped Shape 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.