Never assume that what you are seeing or experiencing is everyone else’s reality.

Atul Gawande can shine a bright spotlight, even with just a few tweets. On Saturday he linked to an article about new social media guidelines for physicians which states:

Aside from not “friending” patients [on Facebook], the guidelines also recommend the following to physicians:

• Don’t use text messaging for medical interactions, even with established patients, except with caution and the patient’s consent. Continue reading

E-patients, Cyberchondriacs, and Why We Should Stop Calling Names–Susannah Fox

New concepts need gimmicks. Proven concepts do not.

The phenomenon of using the internet to gather and share health information is now mainstream. It’s time to change how we talk about it, revising and maybe even retiring certain terms. Carlos Rizo and I invite you (everyone!) to join our discussion on Wed. Sept. 1 at 12noon Eastern: E-patients, Cyberchondriacs, and Why We Should Stop Calling Names.

Some history to build our case:

In 1998, only about one-third of American adults had access to the internet. Harris Interactive published pioneering research about how internet users gather health information online, dubbing these 54 million people “cyberchondriacs.”

In 1999, Tom Ferguson, MD, came up with the term “e-patients” to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. He began work on a white paper, commissioned by the Robert Wood Johnson Foundation, to describe this new development.

In 2000, Lee Rainie and I wrote the Pew Internet Project’s first health report, The Online Health Care Revolution, using the phrase “health seeker” to describe someone who used the internet for health information.

Just to remind you of the sea change we’ve been through, in the year 2000:

  • 46% of American adults had access to the internet (now: 74%)
  • 5% of U.S. households had broadband connections (now: 66%)
  • 25% of American adults looked online for health information (now: 61%)

Over the last 10 years, using the internet to get health information has become an assumption, not an exception. The repetition of this finding from every sector — for-profit, non-profit, academic, government — has made it boring.

But I draw inspiration from Clay Shirky, who has said, “Tools don’t get socially interesting until they get technologically boring.” Continue reading

Patient Voices at CHCF’s Chronic Disease Care Conference–Susannah Fox

This is the second in a series of posts about the California HealthCare Foundation’s Chronic Disease Care conference (the first was Happy Dogs in a Pile of Sticks).

Patient Voices: Managing Chronic Conditions, Living our Lives

Ted Eytan snapped a photo that captured this session: Patient Involvement Makes People Smile

Here is each person’s story: Continue reading

Patient Involvement Makes People Smile–Susannah Fox

Ted Eytan’s Photo Friday features a crowd of chronic disease care providers listening to patients tell their stories — and smiling as they see the impact of what they do. As I wrote in the comments, I’ll post here soon with more notes, but this photo is a good start toward understanding the impact of the event.

Help Me Choose: Sessions at the Chronic Disease Care Conference–Susannah Fox

I will be heading to San Francisco this week to attend the Chronic Disease Care conference sponsored by the California HealthCare Foundation. Registration is closed but I promise to take notes on as many panels as possible. Please help me choose from the smorgasbord of topics and I’ll make you a plate. Continue reading

Participatory Medicine, Connected Health–Susannah Fox

The Center for Connected Health’s 2008 Symposium was held in Boston on October 27-28, 2008.  I gave a talk entitled, “Participatory Medicine: How User-Generated Media are Changing American Attitudes and Actions, Online and Off.” As always, the conversations I had with people after the speech were the best part of the event.

Lena Sorenson, RN, PhD, an Associate Professor at the MGH Institute of Health Professions, pointed out that my 7-word challenge focuses on doctors and should instead focus on “providers” (doctors, yes, but also nurses, therapists, and every other health care professional who cares for people). I updated my slides before uploading them to the Pew Internet site to reflect that important change. Continue reading

Go online. Not too much. Mostly…?–Susannah Fox

Michael Pollan’s answer to diet angst is to “Eat food. Not too much. Mostly plants.” Is there an equivalent maxim for information angst? If not, does someone out there want to make one up? Because a new study published in Cancer argues that e-patients can take a common-sense approach to online health research and do just fine.

I was able to obtain a full-text copy of the report, so here are a few lines you won’t read in the press release:

Few consumers consider the quality of online health information as they conduct their web searches. In light of our findings, perhaps this is not a bad thing.

Wow. Did anyone else hear the scream of a million librarians and accreditation executives?

Continue reading

Harnessing Openness–Susannah Fox

The Committee for Economic Development (CED) is an independent, non-partisan research organization with a trustee list dominated by corporations (not that there’s anything wrong with that — my own funders, the Pew Charitable Trusts, are also listed on the CED site). CED recently released an engaging report entitled, “Harnessing Openness to Transform American Health Care” (PDF).

Here’s a quote from Chapter 6: Expanding Openness for Patients and Caregivers:

“Viewed through the lens of openness, patients are not only the beneficiaries of increased access to information but they are among the most important sources of information for the healthcare system.”

Continue reading