The Information Therapy conference just ended yesterday and my head is buzzing with a few favorite moments:
1) Josh Seidman‘s speech connecting our venue, the Newseum, to his mission by talking about the history of the U.S. press, mail system, and medicine: the Pony Express was viewed as so democratic that it was almost subversive.
2) Bill Kormos talking about Mass General’s program for snail-mailing(!) VHS and DVD informed-decision-making videos. Dr. Kormos said it has been a challenge to get doctors to tell patients about them. I suggested that they put all the videos up on YouTube and let patients and their families drive the demand, but it turns out all the content is proprietary. Too bad — the advanced directive one sounds interesting.
3) Carolyn Pare bluntly saying that we should not only look at health policy, but agriculture policy and tax policy — there are many forces at work to create this health crisis.
4) David Bradley‘s personal story about tracking down the answer to his mysterious ailment thanks to an obscure e-patient community site (after spending big bucks on research and consultations up and down the East Coast).
5) Neil Calman‘s prediction that internet access will continue to penetrate the underserved community as Latino and African immigrants go online to keep in touch with relatives back home.
This was especially important for me to hear since my remarks focused on Josh Seidman’s question, “Are people ready for patient-centered health IT?” The answer is yes, with an asterisk.
I talked about how there are pockets of non-internet users, just as there are pockets of people who do not have a home phone. As Penn State scholar Jorge Reina Schement wrote in 1996, and it is still true today: “Isolation is not distributed randomly; rather, it is concentrated in certain groups so that they suffer its consequences with intensity.”
In addition to the classic low-access demographics, health status is also a significant factor in predicting internet use. If we included living with a chronic condition in the thermometer of access, that group would fall at around the 50% mark, whereas adults with no disability or chronic illness fall around the 75% mark.
And yet, once online, people living with chronic conditions are just as likely to use the internet to gather and share health information as other internet users. A serious diagnosis can be a factor in low access to technology, but not necessarily low interest in health information.
I repeated some of the points I made in a previous speech, then ended with this:
The demo session highlighted some ways to reach people who are “offline in an online world” such as Silverlink and Eliza, which use phone calls to deliver targeted health information. But I think the internet could revolutionize health care just like it has revolutionized the music industry, the travel industry, and the newspaper industry. And with all due respect to this beautiful shrine of a Newseum, those industries got run over by the clue train instead of jumping onto it.
Susannah Fox says
Someone emailed me asking for details about David Bradley’s illness.
Here is what I recall: He woke up one day with no voice, but a “ribbon of pain” running lengthwise on the roof of his mouth. He went to all the best voice specialists and recovered his voice, but could not get rid of the pain.
At his wife’s behest, he stopped relying on his staff and sat down at a computer himself to start searching online. He stumbled upon a support group for people suffering from a horrible-sounding neuro issue (trigeminal neuralgia?) that was worse than what he had but presented in similar ways. Through that group he found a doctor in Pittsburgh who looked in his mouth and identified the telltale line & “stoplights” as shingles. It was the answer he had been searching for in all the best research hospitals — found only when he placed himself at the center of the search and connected with fellow e-patients.
I couldn’t find a definitive article about this, but I did find an announcement of a $10,000 donation to the Chronic Pain Outreach Center and a Washingtonian article that references the episode.
Trivia point: Jaffe’s excellent profile in the Washington Post says Bradley found the doctor in Boston, not Pittsburgh.
My mistake, Harry Jaffe writes for the Washingtonian.
Clarine Cofer says