PatientsLikeMe Chairman on digital health in the future

02 Dec 2015

Digital health is not new, but our understanding of health risk factors and longevity has dramatically improved significantly in recent years. James Heywood, co-founder and Chairman of PatientsLikeMe talks to Jennifer Davies from the Swiss Re Centre of Global Dialogue about longevity in a knowledge-rich society. He also shares his views on the dilemma the insurance industry may face as the increasing availability of data could affect which risks the industry is willing to undertake.

CGD: What are the key messages from your presentation on digital health?

Jamie Heywood: I think one of the most misunderstood things about digital health is that it's something entirely new. It's not. It's a new set of diagnostic tools to get at the core of what human health really is. What we have is an emerging picture of the factors that drive risk in health, the factors that actually measure how healthy we are and then how we manage acute events for survival in the more concrete medical situations.

The challenge in digital health is assembling all of this into an understanding of what of these factors are important for risk, which of these factors are important for managing health, and which of these factors are important in managing acute care. Those are very different problems, and we're at the beginning of a journey to integrate all of this into a holistic understanding.

CGD: As our understanding of risk factors and longevity improves, can insurance survive in an environment where risk is known?

Jamie Heywood: I think there are two main factors to consider here. One is as our understanding of risk and management and health improve, we're going to continue to extend health span, which is sort of the duration of healthy life. That overall reduces the risk of insurance and I think will continue to extend life and improve the human condition.

The second factor that's important though, is there's a balance between the social commitment to well-being and taking care of a society. And, as we understand and improve risk we're going to have hard questions about whether we're willing to withdraw the ability to either individually – or, as a society – support risk of death or risk of disability because we can predict it. There will be a shrinking of the opportunity between the social responsibility where we choose to take care of people regardless, versus the commercial area where people electively take on additional risk management.

I think that will be the big challenge for the industry, which is what is the balance between our shared commitment to each other that goes through social insurance?  Versus the commercial insurance risk, where we allow individuals to purchase reduction of risk on their own. That will be the part that's harder to manage.

CGD: What opportunities do you see for the insurance industry to collaborate with online sharing platforms like PatientsLikeMe?

Jamie Heywood: I think that the bigger thing that will happen as we get better and better models that are predictive here, and we move from provider evidence care to holistically integrative management care, is that these services will have to combine. Why buy a life insurance policy whose incentive is to keep you alive against your health insurance policy that is now paying excess money when you are sick? What you want is a combined system that delivers to you the right value of services for your income or social status or societal level so that it integrates that information into a holistic solution.

That's the bigger challenge, and I think that's when people come up with solutions that are aligned with individual goals more effectively. Then you'll see the free exchange of information in that context.


Jamie Heywood, the Co-founder and Chairman of online sharing platform PatientsLikeMe spoke on the topic of "Digital health" at the 11th CRO Assembly: Technological and societal change, at the Swiss Re Centre for Global Dialogue.


Jamie Heywood

Co-founder and Chairman, PatientsLikeMe

Jamie Heywood is a leader in engaging patients, understanding their needs and in applying entrepreneurial smarts and drive to improving the treatment and delivery available to them. He is a passionate believer in transparency and collaboration.

As the founder of PatientsLikeMe — an innovative web community that allows patients to pool their experiences of disease and treatment — Jamie took an innovative, bottom-up approach to both patient support and medical research. The 250,000+ patients log the progress of their disease in very fine detail, including their treatments and prescriptions, any side effects they experience and much more. This has two radical consequences. First, patients can look at others’ logs and even message each other to learn about the real-world experiences of patients like them. Second, this creates a treasure trove of data about a wide range of illnesses and treatments far beyond what can be captured in traditional clinical studies. It’s a groundbreaking approach that is speeding up the pace of research, democratising patient data, and improving the dialogue between patients and physicians.

In addition to founding PatientsLikeMe, Jamie is also the founder of ALS Therapy Development Institute (TDI), the world’s first non-profit biotechnology company. He founded the company following his brother Stephen’s diagnosis of ALS (Lou Gehrig’s disease) in 1998. Since then, ALS TDI has broken new ground on many fronts and has become recognised as one of the most promising and innovative research organisations in action.

Its achievements include an industrialised therapeutic validation process and one of the world’s leading ALS drug discovery programs. ALS TDI was also the first organisation to run an open research program, posting the results of its studies in real time. Jamie’s work has been the subject of His Brother’s Keeper, a book by Pulitzer Prize-winning author Jonathan Weiner, and So Much So Fast, a Sundance award-winning documentary. He has also been profiled in The New Yorker and on 60 Minutes.

An MIT engineer, Jamie is an active investor and advisor to startups, companies, and non-profits working to improve the way that biomedical research is conducted.