Digital Health: A Declaration of Independence from Antiquated Systems?

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THE HONEYBEE CHRONICLES: PART THREE

An interview with Jamie Heywood, Chairman, PatientsLikeMe

By Claire Topal, Senior Research Consultant, Center for Sustainable Health

In what ways are biosensors and digital health revolutionary?

Jamie Heywood is Chairman of PatientsLikeMe, a platform that allows patients to share in-depth information about their condition to help each other and advance research. An MIT engineer, he entered the field of translational research and medicine when his brother Stephen was diagnosed with ALS in 1998. He founded the ALS Therapy Development Institute in 1999 and remained its CEO until 2007. In 2009, he co-founded HealthDataRights.org. Mr. Heywood and his brother (and PatientsLikeMe Co-Founder) Stephen were the subjects of a Pulitzer Prize-winning biography, His Brother’s Keeper, and the award-winning documentary, “So Much     So Fast.”

Jamie Heywood is Chairman of PatientsLikeMe, a platform that allows patients to share in-depth information about their condition to help each other and advance research. An MIT engineer, he entered the field of translational research and medicine when his brother Stephen was diagnosed with ALS in 1998. He founded the ALS Therapy Development Institute in 1999 and remained its CEO until 2007. In 2009, he co-founded HealthDataRights.org. Mr. Heywood and his brother (and PatientsLikeMe Co-Founder) Stephen were the subjects of a Pulitzer Prize-winning biography, His Brother’s Keeper, and the award-winning documentary, “So Much So Fast.”

Sensors are game-changers for two reasons. The first is their ability to drive individual insight about one’s own behavior and its health impact. Digital health may be a major on-ramp to patient empowerment, which is wonderful. What’s not clear yet is how this information will provide insight into population health.
The second and potentially more important reason biosensors and digital health are game-changers is their ability to democratize access to clinical-grade data for conditions like heart disease, diabetes, and lung conditions. That democratization will put many more eyes on the data and will generate more hypotheses and potential solutions. This will help shift the center of power and the understanding of disease from physicians and researchers to individuals and the crowd, which I believe will drive optimization of care and innovation.
Lastly I believe that this creates a virtuous cycle causing demand from consumers for better data, and that’s what’s really going to shift the system.

How can we harness wearable biosensors and digital health—and the data they generate—at scale?

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Just the other day I met Doug Kanter, a Type I diabetic thought leader who has built a tool called Databetes. He showed me an amazing circular graph with his glucose level, HBA1C and marathon training (in steps) and other variables beautifully plotted as a year in his life. His goal is to determine the relationship between all his personal patterns. There are thousands of one-off self-experiments like his and he is enabling more. They’re amazing and worthwhile, but they generally lack an underlying common framework.
Almost every experiment is done in a different way, with different parameters, measurements, and tools. What you get out of those are insights and hypotheses, but usually not validated, scalable or actionable knowledge.
This is not to say that these one-off experiments are not hugely valuable. They actually remind me of the computer industry before it was networked. That industry had many amazing applications and inventions. It also had a lot of redundant effort and activity. Kind of like the silos we see in healthcare today. The Internet and the advancement of programing languages solved that through increasingly sophisticated ways of connecting information, tools, and utilities across time and space, helping identify and reduce redundant efforts and accelerating and democratizing the ability to acquire knowledge from the world.
The convergence that I am hopeful about—and where I see Project HoneyBee making an impact—is the ability to keep the door open for innovative one-off experiments, and to also to begin to anchor them in a common health assessment framework that is agnostic of the technology or disease. This enables the rapid generation of individual hypotheses; it also then allows scaling and reuse through the crowd model, instead of just through the top-down siloed model.

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Digital health is democratizing data and forcing us to rethink our roles. Do you see digital health increasing the value of any unlikely stakeholder?

Many problems are not technical or clinical; they are actually user experience problems. It’s rare to find UX designers trying to play doctor. Why are so many doctors trying to, or being forced to, play designer?
To truly do something right in healthcare, so many people and perspectives need to be at the table: the patient, the researcher, the doctor, the nurse, the payer, the physician. Everyone has a stake and a role, and everyone needs a voice. In almost all cases today the missing voice is design. Design in this context is about making a transaction efficient and value-generating. Good designers are aware that what you don’t include can convey far more meaning and engagement to essential information.
In medicine, the physician has traditionally had the final word, overruling all other parties. That’s one of the reasons that the interfaces in EMRs are terrible. Physicians are generally terrible designers. They over-assume their ability to process diverse information. They over-assume their willingness to enter information. They don’t think about process efficiency in the way the designers do. When the physician gets to be the designer, the most important element in accomplishing a good health interface is often lost.

Patients are the ultimate stakeholders in healthcare. But beyond enlisting them in clinical trials, health systems and research are still grappling with how to leverage their insights and inputs. How do you leverage patient participation in meaningful ways?

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I think it’s important to be clear on what you want people to do. PatientsLikeMe just formed a patient advisory board. We deliberately waited to form it until we had a clear focus and a question we needed

patients’ help answering. We set up a series of working groups and collaborative projects where patients are members of teams, alongside scientists, designers, and medical experts.To make patient participation in these teams meaningful (rather than just asking their opinions and leaving it at that), we need to really support each person. We have to travel to be with them, deeply engage them in our problems, and they have to be available to be part of the process.
Interestingly, once trained at some level, patients can lose some of their value as patient advisors because they become a kind of scientist and expert. There is tremendous value in patient naiveté – being new to the disease or condition or health system experience. How we empower patients while also leveraging that fresh perspective remains a challenge.

What are some of the biggest barriers you see to our ability to take meaningful advantage of new technologies for health?

One barrier is that we simply cannot assume that the people we’re seeking and focusing on share our motivations. This manifests in the language we use: subject, compliant, etc. – paternalistic terms designed to create subjugation.
Another barrier is impatience and condescension. Sometimes researchers or doctors can get frustrated when patients don’t know the right terminologies for a disease; sometimes we use condescending language, and can even be a little mean about that ignorance.heywoodQ2
This isn’t only a physician problem; it’s part of a human nature problem. Here’s an example: when I observed our patient communities go up, the first 700 patients would rapidly become experts. What’s interesting to me is how sometimes those first “new experts” then turn and are impatient and even unkind to new members who have not had the chance to learn. We are all naive at one point; learning how to help educate with kindness and respect is a skill we can all work on.We need to acknowledge that the term “patient” doesn’t honor the nuances of individual knowledge and experience. I think what the medical community thinks of as a “patient” is someone who is naive to the ways of the model of medicine and research. After that first diagnosis, the “patient” becomes something else, something more. They actively seek out information and experiences to learn from. They rapidly become a kind of expert in the area of their condition.

You’ve described a number of changes that digital health will help drive. What most excites you about the future?

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I am unbelievably excited about what’s going to happen in our understanding of health and the human condition over the next 20 years. I think we are going to witness the shift from our current principal investor-based, siloed research model toward a networked, democratized, hypothesis-generating, health learning system.

When you look at the consequence of Moore’s law on the ability to measure biology, which is going even faster than it did in computing, and you combine that with the context of distributed networks that are framed around important health concepts, and you add to that the digital measurement of humans in the world, it is hard to overstate what the implications will be for each of us to achieve our own maximum potential.

It’s possible that digital health may be the Declaration of Independence for each of us that helps us move away from an old and traditional health system, and gives us the opportunity with diagnostics, digital sensors, and health networks to pursue life, liberty, and happiness through science.

 

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