Peer-to-Peer Healthcare
Discussion
P2P Healthcare is not about diagnosis
Susannah Fox:
"9 out of 10 adults in the U.S. say health professionals are more helpful than fellow patients, friends & family when it comes to getting an accurate medical diagnosis.
The picture shifts when we ask about emotional support in dealing with a health issue: fellow patients, friends, and family are the much more popular choice. And it is an even split when it comes to practical advice for coping with day-to-day health situations: professional sources like doctors and nurses rank pretty much even with fellow patients, friends, and family.
The bottom line is that the internet does not replace health professionals.
Peer-to-peer healthcare is a way for people to do what they have always done – lend a hand, lend an ear, lend advice – but at internet speed and at internet scale. It’s the evolution of internet use that the Pew Internet Project has been tracking in other industries, and it’s just finally having an impact on health care.
Remember the “mobile difference” – hand someone a smartphone and they become more social online, more likely to share, more likely to contribute, not just consume information.
We have also identified the “diagnosis difference” – holding all other demographic characteristics constant we find that having a chronic disease significantly increases an internet user's likelihood to say they both contribute and consume user-generated content related to health. They are learning from each other, not just from institutions.
These two forces are coming together to drive forward this trend of peer to peer healthcare. On the one hand we have the availability of social tools and on the other hand we have the motivation, especially among people living with chronic conditions, to connect with each other.
Pew Internet research shows that one in five internet users have gone online to find others who might have health concerns similar to theirs.
That percentage is even higher – 1 in 4 – among those living with chronic disease, those who are caring for a loved one, and those who have experienced a significant change in their physical health, such as weight loss or gain, pregnancy, or quitting smoking.
All of these groups are also more likely to use social networking sites like Facebook to gather health information and to follow their friends’ health updates on the sites.
The tools are in place. The culture is shifting to expect that people have access to information and each other. There is mounting evidence that connecting patients with each other and with their data can have a positive effect on health outcomes.
But we are still at the early adoption stages.
What will it take to bring this to the next level?
Let’s go over the roadblocks:
pockets of people who are truly offline, which mostly describes people age 70 and older or those living with chronic disease or disability people who see no reason to engage in their health, who are not motivated to change their behavior or seek treatment technology that is simply a pain to use communities and tools which are silos of information – unconnected to clinical practice and unable to connect with each other a lack of awareness that online communities, information resources, and other tools exist and can help make a difference in health outcomes
Let’s go over the opportunities:
caregivers who can help someone access online resources they may need to get better care – that’s second-degree internet access a life-changing diagnosis or other event can prompt engagement – and trigger the diagnosis difference mobile adoption is on the rise and seems to have an independent effect on people’s engagement online – triggering the mobile difference technology that is easy to use, that makes engagement fun and even irresistible technological means to connect silos and let data flow mainstream press coverage, word of mouth, and clinical programs that help to spread awareness."
(http://www.pewinternet.org/Reports/2011/Medicine-20/Part-1.aspx)
Enablers of P2P Healthcare
Susannah Fox:
"examples of some leading indicators – beacons of change that address some of these roadblocks and opportunities.
Beacon #1: Patient leaders.
Catherine Calhoun, mother of Billy, a 9-year-old boy who happens to have McCune-Albright syndrome, which among other things, causes severe bone pain.
They live in Louisiana but Catherine has researched and networked her way to getting Billy cared for at the best clinical centers in the U.S. She has no formal medical training, but sends so many patients to Billy’s bone doctor and endocrinologist that these doctors refer to the appointments as “consults for Dr. Calhoun.”
Catherine is now working on a bioethics project and was recently in a discussion group with clinicians who talked about how cutting-edge, off-label use of medications are discreetly shared among colleagues at conferences and in social settings. But what about clinicians who aren’t privy to those conversations? Catherine spoke up: “You hope the parents find a big-mouth, trouble-making mama like me who will give them a list of the possible medications and the whys and hows and whos.”
Is that good enough for us? Is that the best we can do? Not to take anything away from Catherine – she’s an incredible force for good in the world. How do we take what she and other experts know – and multiply it?
Beacon #2: Clinician leaders.
I think that clinician involvement may be a significant piece of the puzzle -- a way to spark interest among people who have internet access, who are using social tools to connect with their friends, but who are not yet using any of that networking capability for health. A recommendation from a clinician is powerful.
Children’s Hospital in Boston created a social networking software application for members of the existing TuDiabetes community to report and chart hemoglobin A1c values. The resulting tool, TuAnalyze, allows people to contribute their own data and control who has access to it. As for the network, users are as likely to say that they receive helpful information on hypoglycemia from TuDiabetes as from their doctor.
TuAnalyze opens the door between the patient social network and the clinical setting. What if that door was opened by a clinician, who prescribed TuAnalyze to her patients? Would that bring peer-to-peer healthcare to a new level?
Beacon #3: Technology leaders.
People who make it easy – even fun – to track health data and connect with other people. Sites like PatientsLikeMe, Inspire, and Curetogether; tools like FitBit; games like HealthMonth.
(http://www.pewinternet.org/Reports/2011/Medicine-20/Part-1.aspx