Tessa Richards: Health 2.0—new technologies and e-patients

Tessa Richards“All changed, changed utterly.” W B Yeats’s famous line was triggered by the Irish rebellion in 1916. Close to 100 years on, it could describe how digital technologies and social media are changing the world; not least the world of healthcare. At the Doctors 2.0 & You conference—launched and led by Denise Silber, a Paris based digital health consultant—delegates fizzed with enthusiasm. Their tweets contended with the dawn chorus, as word was instantly spread about “le dernier mot” on health apps, “serious” games for health, “wearables” (think Google Glasses), and the use of social media in health (#doctors20). And on how big data around the global, online discourse on health is being tracked and analysed.

In contrast to many health fora, patient representation was strong, and their contributions equally so. Those who have found the willpower and energy to use their experience of illness to innovate, and help others, tend to be effective advocates. A well known example is e-patient Dave (deBronkart), author of Let Patients Help, which is a must read for doctors and patients alike. He defines e-patients as “empowered, engaged, equipped, and enabled.”

E-patient leaders presenting at the meeting included Seth Ginsburg, who spoke about CreakyJoints.org, a community for people with joint problems, which he pioneered at 18—just five years after the onset of his own illness. The stories people post on the site, as on other patient sites, illuminate as this example shows. The site is not dissimilar to rawarrior.com, set up by Kelly Young, who has successfully challenged doctors to rethink their concept of rheumatoid disease.

She chose the term “warrior” to reflect her passion to fight the disease, she said when we talked recently, not as a combative signal. Another e-warrior who spoke at the meeting was Michael Weiss, who campaigns to raise awareness about, and support for, patients with Crohn’s disease. Watching him tirelessly interview, take video’s, and extend debates was impressive. The subtitle of his site is telling: “Patients helping other patients is the best medicine.”

As the number of devices and apps that allow people to “quantify” their own health grows, some burning questions remain. If, how, and how much can these help maintain and improve people’s health, as well as enabling those who live with long term conditions to monitor and manage them better? The rationale and potential is there, and the technology is increasingly sophisticated and engaging. While scepticism remain about their value to individuals and health systems as a whole, some applications’ worth is obvious, as presentations underlined. For example, the contrast between the struggle to get through to the local doctors surgery to book an appointment for a blood pressure reading (and a fifth of us get white coat hypertension), versus using a home BP monitor, is stark.

Some speakers radiated joy (or was it triumphalism?) as they recounted how their health apps pushed prompts, which had spurred them to adopt the lifestyle changes they were seeking to embed in everyday behaviour. Most of the 400 meeting participants signed up to the invitation to wear an app to monitor how far they had walked during the meeting. Did those who donned their wristband, and went on early morning runs to build up impressive scores, do it from force of habit or in a spirit of competition? I’d like to know. Whatever, I am firmly in the “why not have these apps at all meetings” camp.

Dr Liana Lianov, from University of California, Davis, was convincing on the role of digital technologies in the nascent specialty of lifestyle medicine. But she emphasised the need for good evidence on cost effectiveness, and warned of user fatigue; particularly if devices are not customised. It’s also important, she said, that they don’t add to the widespread “Too Much Medicine” problem. It has been awareness of this problem that has driven a new German initiative, called Medexo. This facilitates people going online to get “second opinions,” and it got second prize in the 2014 Doctors 2.0 & You “Start-up” competition.

The quality of the relationship between patients and health professionals, which technology has the power to foster, remains vital. Just as there are questions about the value and best use of new digital technologies and social media to improve health, there are still questions to be answered on how best to engage, and meaningfully partner with, patients. But the search and drive for partnership is on.

Surgeons love new technologies, and Rafael Grossmann, a trauma surgeon at Eastern Maine Medical Center, showed participants how he uses Google Glasses in theatre, and as a tool for surgical training. It was a convincing demonstration. But few bought the view that talking to doctors with (Google) glasses on will foster better quality consultations—as a result of less time looking at the computer screen. More intriguing was the idea that people with mild dementia, who, for example, may forget their PIN numbers or family member’s names, might use “wearables” as a prompting device.

For any parent who has attempted to drag their children away from their computer games (and who has not?), presentations on games as therapeutic (as well as teaching) tools were exciting. Evidence of their effectiveness is growing, and Games for Health Europe are holding a conference on the subject later this year.

It was perhaps predictable that seats at a session on the future—run by Dr Bertalan Mesko, a self styled “medical futurist, geek medical doctor with a PhD in genomics,” and founder of webicina.com—were “sold out” in advance. But for those who could not be there, and want to learn more about Doctors 2.0 & You, much is revealed at doctors20.com.

Tessa Richards is senior editor/patient partnership, The BMJ.

This blog was originally posted on Doctors 2.0 & You’s website here.