Jane Sarasohn-Kahn is one of our new board members and has very deep experience in healthcare in the US, particularly in the area of consumer health and consults with companies and foundations including Intuit and the California HealthCare Foundation after having spent many years with consulting firms in the US and Europe. Her blog, Health Populi, is one of the most informative sources of information on trends impacting the consumer health market, patient data, ethics and retail health to name a few. One of her most recent reports for the California HealthCare Foundation explored the secondary markets for health data and some of the emerging challenges consumers face with the effects of new tools from data mining to predictive modeling based on data from OUTSIDE of the healthcare system that can be used to predict a person’s risk of having a particular medical condition. In another paper she explores the growth of sensors and what is happening with all of that data.
Both of these areas are important to health bank’s work so we decided to have a chat about her perspectives on some of the trends and why she joined our ranks as an Advisory Board member.
Jane-Sarasohn-Kahn Tell us a bit more about your background and some of the digital health issues that you are most passionate about?
I’m a health economist focused on the intersection of health, technology and people – and passionate about how technology can help us bolster personal and social health effectively and economically. People love mobile technology – our colleague B.J. Fogg has said we not only adopt cell phones – we marry them. With the majority of mobile phones now smartphones, every one is carrying out a handheld computer that can be a personal healthcare and wellness channel. That’s the potential upside. The downside is that as people leave digital footprints wherever they “go” in this environment, there’s a lack of mindfulness about where data go and how to identify good data stewards.
The health data report Here’s Looking at You was of great interest to us here at health bank for the range of new ways that companies are making sense of all types of data as they pertain to health and healthcare. Can you tell us a bit about some of the more surprising findings of the report?
The top-line of the report is that anyone who uses a credit card to buy, a social network to check in, or a mobile app to track activity or eating is generating data that often falls out of the purview of privacy laws. Those data points can be scraped by third parties who aren’t covered by HIPAA in the US or other nations’ privacy legislation, and repurposed for uses that fall out of the original context for creating and tracking the data. The promise for aggregating data from both health”care” legacy players (hospitals, doctors, pharmacies, health insurance) coupled with the social determinants of health (food, education, exercise/activity, air quality, safe environments, and others) and observations of daily living is powerful for individual and public health. So we don’t want to throw the proverbial baby out with the bathwater – we want to leverage this information and also ensure consumers’ control over their personal data: where it flows, who has access to it, and how it is used and potentially re-purposed.
What are some of the emerging risks that you see and do you have any thoughts on what we might be able to do to better protect the consumer?
The big risks are those that compromise a person’s wellbeing, economic and social – data being triangulated and used against you when you apply for a home mortgage loan or employment, and you find out ex post facto that your credit score or a third-party report on your personal history is in the hands of a bank or potential employer. Socially, if you are diagnosed with, say, a mental health condition or infectious disease, you may find someone using this information against you. It could be used as a form of social blackmail.
You have also written quite a bit about sensors and wearables and are an active user of some tracking devices. What are some of the most important trends you see looking out over the next 2-3 years and what needs to happen to make better use of the data so it is just not sitting in the usual silos?
My report on sensors was titled “Making Sense of Sensors” because that’s the challenge. It’s quite easy now to place small, inexpensive sensors around our homes, in our cars, and on our bodies – increasingly cheaper, smaller, and more powerful. There are now sensors in the form of tattoos in pilot for monitoring metabolism and blood glucose, which would make tracking for people with diabetes ever more streamlined and less painful. All of those sensors create data points, 24×7, that exponentially multiple over time and over a growing “N” of people. What to do with the data glut? In health, clinicians are concerned about that glut, and consensus is growing that the industry needs to solve this very quickly. So we see the likes of IBM’s Watson and other Big Data projects emerging to meet this challenge. These projects are already solving some healthcare issues, like predicting a health citizen’s risk for falling in the home, or preventing a readmission to hospital due to risk of unmanaged chronic heart failure. As for the siloes, there is still a cadre of data jealousy in the legacy healthcare system – hospitals, health plans and providers holding tight to the data. But as payment moves from “volume to value,” that is paying for outcomes and real health care impacts in individual health citizens and public health/population health, there is an incentive to share data and move toward data liquidity. This is where we are in the US now, in this transition period. In local markets where value-based payment is growing, we’re seeing more data sharing. And in situations where patients are very sick, there’s a growing sense of “data altruism” – health citizens wanting to share their personal health data for the benefit of peer patients and future patients. So that’s a pressure from the ground up to the legacy healthcare players. This all creates opportunities for new entrants in health/tech and health/care like health bank on the tech side, and on the care side, the new retail players in health and online clearinghouses for consumers looking to identify, access, schedule, and pay for health care services at a “strike price.”
When we think about health policy and data our minds usually gravitate towards HIPAA and privacy. What do you think we need to start doing to move beyond this more static framework to have a framework that encourages innovation while also protecting privacy and security?
In the US we need a structure that’s more macro for citizen privacy, like the European model. There are those who believe HIPAA is “enough,” but due to the data flows that HIPAA doesn’t cover and the nature of data generated via mobile – the social determinants of health stuff – I don’t believe HIPAA goes far enough. We can’t write up business associate agreements fast enough, or even know “who” is accessing our very liquid data points 24×7.
Health bank is a coop and many Americans typically think about coops in terms of organic grocery stores but not as a major part of the economy. Yet, some of the largest healthcare providers in the US are coops such as Kaiser Permanente, Group Health of Puget Sound. Any thoughts on cooperative business models in healthcare and can you tell us more about why you got involved with health bank and what you hope to see in its future?
To me, health bank is one of the new entrants in health/care that can help solve the challenges we’ve discussed here: the need for consumer sovereignty, control and competence over personal health data that can underpin health and social engagement. But the cooperative movement in the US is misunderstood and so at health bank we’ll work to educate people on the general concept and how it is so relevant to this new era of health, technology, privacy, and consumer rights. There’s one thing that’s certain in the current US healthcare environment: consumers are morphing into health citizens, with more responsible for financial and clinical decision making. That requires growing new muscles and adopting new tools for exercising those muscles, and health bank will enable and empower people to do just that.