This piece is part of the series “The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?” which explores whether it’s possible to advance interoperability while maintaining privacy. Check out other pieces in the series here.
A question I hear quite often, sometimes whispered, is: Why should anyone care about health data interoperability? It sounds pretty technical and boring.
If I’m talking with a “civilian” (in my world, someone not obsessed with health care and technology) I point out that interoperable health data can help people care for themselves and their families by streamlining simple things (like tracking medication lists and vaccination records) and more complicated things (like pulling all your records into one place when seeking a second opinion or coordinating care for a chronic condition). Open, interoperable data also helps people make better pocketbook decisions when they can comparison-shop for health plans, care centers, and drugs.
Sometimes business leaders push back on the health data rights movement, asking, sometimes aggressively: Who really wants their data? And what would they do with it if they got it? Nobody they know, including their current customers, is clamoring for interoperable health data.
We missed our chance to do a Happy Hour Health in 2 Point 00 at Connected Health in Boston (but let’s be honest, those are usually not the most cogent pieces of information in health and technology). Join Jessica DaMassa as she gets my take on the conference starting with #S4PM’s event, where I met some incredible people, including Patty Brennan and Doug Lindsey, who spoke about their experiences with health care knowledge (deploying it and creating it!). Danny Sands and e-Patient Dave even had quite the musical performance there, singing about e-Patient blues. Susannah Fox, Don Berwick, Don Norman were at Connected Health 18, presenting their new initiative, L.A.U.N.C.H. I even interviewed Jesse Ehrenfeld, the chair elect of AMA, and his spoke to him about the digital health play book that the AMA just released. A company to take note of that wasn’t at #CHC is Devoted Health, who just raised $300m. Devoted is looking at building a better Medicare Advantage “payvider” for seniors. If you are interested in Guild Serendipity’s conference which empowers and engages female CEOs and Cofounders, come join us in San Francisco October 26-27, SMACK.health is sponsoring the women’s health houses – Matthew Holt
How are teens and young adults engaging with digital health? Results of a national survey asking just that were released today by Susannah Fox (Former CTO at US Dept of HHS) and her research partner, Victoria Rideout.
You can check out the full report of the findings here, but I spoke with Susannah in April, just as she and Victoria were starting to draw some insights from their work.
Hearing her talk about the survey at this stage of synthesis is not only unique (most researchers won’t talk until the findings are published) but more so because it adds a layer of understanding to the final results now that they’re here.
We get her candor about how teens and young adults are a wildly viable – yet very overlooked – market for digital health…
We see how she’s trying to formulate a much larger hypothesis about what healthcare can learn about social media from a generation that has never lived without it and, more importantly, view it as having a positive impact on their well-being…
And, probably most inspiring to me, we see an approach to health data that stands out for its warmth. For it’s love, really. In a world of big data and clinical trials, it’s endearing to hear from someone who is taking a more anthropological approach and who has fallen absolutely, head-over-heels in LOVE with the personal side of her dataset.
As we all clamor for a patient-centered end, we’d be remiss to underestimate the value of a human-centered starting point. Watch Susannah Fox for a strong model of how this can be done in health research.
Filmed at Health DataPalooza, Washington DC, April 2018. Find more interviews with the people pushing healthcare to better tomorrow at www.wtf.health.
Susannah Fox, CTO of HHS, shares how she is fostering patient empowerment and engagement through technology. Matthew Holt, Co-Chairman of Health 2.0, had the opportunity to personally chat with Susannah and learn more about the democratization of healthcare!
Matthew Holt: Matthew Holt here, delighted to be on with a really wonderful amazing person in healthcare who is not only my friend but also the CTO of HHS, Susannah Fox. Susannah, thanks so much for joining us.
Susannah Fox: I am thrilled to be talking with you.
Matthew Holt: Well, so those of you who don’t know — Susannah originally was a journalist at U.S. News and World Report and spent many, many years at Pew Research, and is basically leading the survey research understanding the patient experience — probably in healthcare as a whole but studying the patient experience with the use of technology. She happens to be the first proper keynote speaker we ever had at a Health 2.0 conference back in 2008, attended Health 2.0 in many different places with us, and has been a great friend and colleague.
In January we started asking ourselves, “How many people self-track?” It was an interesting question that stemmed from our discussion with Susannah Fox about the recent Pew report on Tracking for Health. Here’s a quick recap of the discussion so far.
The astute Brian Dolan of MobiHealthNews suggested that the Pew data on self-tracking for health seems to show constant – not growing – participation. According to Pew, in 2012 only 11% of adults track their health using mobile apps, up from 9% in 2011.
All this in the context of a massive increase in smartphone use. Pew data shows smartphone ownership rising 20% just in the last year, and this shows no signs of slowing down. Those smartphones are not just super-connected tweeting machines. They pack a variety of powerful sensors and technologies that can be used for self-tracking apps. We notice a lot of people using these, but our sample is skewed toward techies and scientists.
What is really going on in the bigger world? How many people are actually tracking?
A few weeks ago ABI, a market research firm, released a report on Wearable Computing Devices. According to the report there will be an estimated 485 million wearable computing devices shipped by 2018. Josh Flood, the analyst behind this report indicated that they estimated that 61% of all devices in wearable market are fitness or activity trackers. “Sports and fitness will continue to be the largest in shipments,” he mentioned “but we’ll start to see growth in other areas such as watches, cameras, and glasses.”
One just needs to venture into their local electronics retailer to see that self-tracking devices are becoming more widespread.
So why are our observations out of synch with the Pew numbers?
In a few days, I will be releasing the most controversial healthcare project I have ever worked on. But you do not need to take my word for it. I will be releasing a completely new healthcare data set. That data set, which will remain a “Mystery Data Set” until its release to the healthcare data scientists attending Strata RX, should completely revolutionize the way we think about healthcare delivery in the United States.
This mystery data set is the first real outcome of the Patient Skunkworks project. Patient Skunkworks is a new way for me to try and create high-impact but low-profit software projects. This is part of a new Not Only For Profit software development model that I have been working on. The new company forming to do this work will be called Not Only Development.
I will be releasing this data during the last keynote on the first morning (Oct 16) of the 2012 Strata RX conference. There is simply no way, in a single keynote, to even begin understanding all of the ways that this data set will be leveraged to improve healthcare. More importantly, there is really no way to adequately explain why I would choose to give away such a valuable and dangerous data set.
To help people digest the implications of this data set, I will be writing two articles about the data set. This one, before the release which helps to explain the underlying motivation behind the release, and another one after the release explaining what the data set is, and how I think it can be leveraged.
I am releasing this dataset because I believe that the only way to solve the problems in healthcare is to embrace a radical openness with health data. Healthcare data, with the exception of patient identity data, belongs in the open, in the sunlight. When used correctly, I believe that healthcare data should make patients feel empowered, and everyone else in the healthcare industry uncomfortable. I believe that patients deserve deep, dangerous and real access to data. I think when we start talking about how data might actually be dangerous for patients, its just a sign that we are “doing it right”. I call this concept Radical Access to Data (and yes, that recursively spells “RAD”).
Pew Internet has also documented the fact that, among other groups, people living with disability and those living with chronic health conditions are disproportionately offline. Some people have only dial-up or intermittent access, like at the library or a friend’s house, and therefore miss out on important conversations or information.
The internet can also transmit false or misleading information. A 2010 survey found that 3% of all U.S. adults said they or someone they know has been harmed by following medical advice or health information found online (1% minor, 1% moderate, and 1% serious harm). Thirty percent of adults reported being helped.
There are emotional pitfalls online, too. A 2006 Pew Internet survey found that 10% of people seeking health information online said they felt frightened by the serious or graphic nature of what they found online during their last search.
“I don’t know, but I can try to find out” is the default setting for people with health questions.
The internet has changed people’s relationships with information. Data collected by the Pew Internet Project and the California HealthCare Foundation consistently show that doctors, nurses, and other health professionals continue to be the first choice for most people with health concerns, but online resources, including advice from peers, are a significant source of health information in the U.S.
These findings are based on a national telephone survey conducted in August and September 2010 among 3,001 adults in the U.S., with interviews conducted in either English or Spanish and including 1,000 cell phone interviews. The full report, “The Social Life of Health Information, 2011,” is available at pewinternet.org.
The survey finds that, of the 74% of adults who use the internet:
80% of internet users have looked online for information about any of 15 health topics such as a specific disease or treatment. This translates to 59% of all adults.
34% of internet users, or 25% of adults, have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.
25% of internet users, or 19% of adults, have watched an online video about health or medical issues.
24% of internet users, or 18% of adults, have consulted online reviews of particular drugs or medical treatments.
18% of internet users, or 13% of adults, have gone online to find others who might have health concerns similar to theirs.
16% of internet users, or 12% of adults, have consulted online rankings or reviews of doctors or other providers.
15% of internet users, or 11% of adults, have consulted online rankings or reviews of hospitals or other medical facilities.Continue reading…
about the social life of health information and the internet’s power to
connect people with information and with each other. Living with
chronic disease is associated with being offline – no surprise. What’s
amazing and new is our finding that if someone can get access to the
internet, chronic disease is associated with a higher likelihood to not
only gather health information but to share it, to socialize around it.
my talk around two examples of how health care can either take advantage
of patients’ shared wisdom (and innovate) or ignore it (and fail).
innovation example was CureTogether’s crowd-sourced migraine findings: 147 treatments were evaluated
and ranked according to their effectiveness and popularity, with some
surprising results. My fail example was taken from Diana Forsythe’s
classic essay, “New Wine, Old Bottles.” Designers of a migraine
information resource asked a single doctor what he thought patients
should know, rather than going directly to the patients. Not
surprisingly, the number one question asked by newly diagnosed migraine
sufferers was not addressed: Am I
going to die from this? Ridiculous to a doctor, but
essential to a patient.
The (not huge) world of Health 2.0, participatory medicine and ePatients has been fretting itself about a comment Susannah Fox (all hail) elevated into a post called “What’s the Point of Health 2.0”.
Here’s an excerpt from the comment from DarthMed,
The remaining 95% of “patients” out there are not motivated to become informed, or invest the time/energy/money in using any of these tools. These are the folks that know that fast food isn’t healthy, but are just too tired to choose differently. Some (emphasis on some) will do a standard Google search when they receive a new diagnosis at best. Yet these are the folks – often folks with multiple chronic (often preventable) health problems, many overweight, on multiple medications, sometimes social problems – that have the real issue that needs fixing.
So we can all sit and perfect the tools for a few folks that never needed them anyway, or we can recognize that the kinds of solutions required for healthcare in the US today have nothing to do with fancy IT, or prioritization on search engines, and everything to do with low-tech, unsexy approaches toward grass-roots public health. Sorry to be the voice of reality guys.Continue reading…