Author: Editor

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Health professionals have much to gain – and to contribute – from engaging with online discussions and sharing of news and information.

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Social media has helped amplify the voice of many niche communities.

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Nearly 60% of U.S. adults look for health information online, according to the Pew Research Center’s Internet & American Life Project in Washington. And one-quarter of U.S. adults have read someone else’s writing about their medical issues in a blog or on a website.

 

More than 95 million Americans visited websites related to health, fitness and nutrition in June, according to Nielsen. That’s more than two out of five people who were active online that month. WebMD Health Network led the way with 24.6 million unique U.S. users, followed by Everyday Health, Yahoo! Health sites, Livestrong.com and About.com Health, Nielsen found.

 

Here are six questions to ask yourself when searching for online health information:

 

1. Are you going to multiple sites and not just stopping at one commercial site, such as the drug manufacturer’s website, for your information?

 

2. Do you winnow your printed material down to a manageable load before you present it to your doctor?

 

3. Are you working with a doctor or clinical team that’s open to discussing what you find online?

 

4. Have you browsed the websites of national nonprofit organizations dedicated to your condition?

 

5. Have you overlooked patients’ experience close to home in favor of online groups?

 

6. Are you using the buddy system?

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Susannah Fox (@SusannahFox) writes:

 

‘My schedule only allowed me to attend Day One of the fantastically rich Medicine 2.0 Congress being held this weekend in Boston. I thought I’d share my impressions and notes in case they spark inspiration for other people, as each presenter and hallway conversation did for me.

 

When I arrived at 7:30am, there was no line at the registration desk, so I grabbed my badge (created in the brilliant style of last year’s, as designed by Larry Chu) and started chatting with people.

 

I had a wonderful talk with a medical librarian working the National Library of Medicine table (sadly, I didn’t get her name). She told me that one of the most useful Pew Internet data points is this one, from a 2009 report:

 

Now thinking about all the sources you turn to when you need information or assistance in dealing with health or medical issues, please tell me if you use any of the following sources…”

 

86% of all adults ask a health professional, such as a doctor.
68% of all adults ask a friend or family member.
57% of all adults use the internet.
54% use books or other printed reference material.
33% contact their insurance provider.
5% use another source not mentioned in the list.

She uses it to advocate to her fellow librarians to keep books front and center, even as libraries adapt to the new digital realities. I pointed her to Pew Internet’s Libraries topic page as well as our Libraries in the Digital Age blog.

 

Gunther Eysenbach, founder of Medicine 2.0, opened the event right on time at 8am, as he said, “because I’m German.” I believe that the organizer deeply influences the personality of a conference. In this case, it is an academic conference, welcoming of researchers, clinicians, patients, and entrepreneurs (roughly in that order). There is also a sense of humor and adventure at Medicine 2.0, which are also aspects of Gunther’s personality (ask me some day about the time he dropped into John Lester‘s Second Life demo as a half-naked avatar).

 

Jamie Heywood’s keynote was perhaps the 30th speech I’ve seen him deliver and, as always, it was an inspiring indictment of the status quo in medicine. If you haven’t seen him tell the story of PatientLikeMe’s founding, his TEDMED talk is a good introduction. You could still see the fire in his eyes yesterday as he described fighting for his brother’s life, but now he’s banked the coals and is in for the longer fight of saving health care. Hopefully his talk was captured on video and will be released soon.

 

I stayed in the auditorium for the next installment of the PatientsLikeMe show — Paul Wicks, director of research and development, who joked that Jamie gave the 30,000-foot view and he, Paul, would give the 6 foot 2 view. It also was an enlightening talk, tuned just right for this audience, with insights about how to scale research that asks so much from participants. Here’s my capture of one key “how-to” slide:

 

Centralize, Rationalize, Simplify

More consistent navigation (w/funnelytics)
Moderators “floating” not specific communities
Admin tools not custom code
Greater use of collaborative workspace

Sally Okun, PatientsLikeMe’s Health Data Integrity & Patient Safety Manager, followed with what she called the “sea-level view” — a focus on patients themselves. I especially liked her description of how they started with two “buckets” (symptoms and treatments) but responded to their users’ wishes to track many more aspects of their lives. The new bucket list includes:

 

lab tests
conditions
hospitalizations
side effects
equipment
yoga
prayer
surgery
life events
pets
(Note: in no particular order on her slide.)

 

She closed with a poem she wrote: “To Learn / listen well / to impressions / voiced by patients / first”

 

At 9:45am I went to a session entitled “Building virtual communities and social networking applications for patients and consumers.” My phone was dead so I couldn’t tweet, but there sat Gonzalo Bacigalupe (@bacigalupe, pictured with Susannah Fox above) in the front row, a health geek scribe who was not letting anything get past him, so I rested my fingers.

 

Colleen Young (@Colleen_Young), manager of the Virtual Hospice community, presented her lessons on “How to Build and Sustain a Thriving Online Health Community.” She has promised to upload her slides, so I’ll link to them later, but here are a few notes I took:

 

“The irony is not lost on us that we are building a thriving community for the dying.”

 

[Read Susannah Fox’s full article by clicking on the title link above.]

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Experts from across the world are gathering in Moray for a conference looking at the benefits of digital healthcare.

 

New technology, which allows patients to report their symptoms using computers in their home, is being seen as a major boost for people living in remote areas as it allows doctors to monitor them more closely.

 

A pilot scheme run by NHS Grampian allows respiratory patients, for example, to use a touchscreen computer to report to their doctor’s surgery and check their own breathing and oxygen levels using specialist kit.

 

More than a hundred delegates from across the world have gathered in Forres to discuss the digital health technology, which is can also be useful in remote regions where it can be difficult to reach a doctor.

Experts say digital healthcare can also cut costs and give patients greater control over their well-being.

 

It is hoped the conference will also forge links between countries hoping to implement the technology.

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A presentation delivered at #ESMO12 by Kathy Apostolidis (@kgapo)

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The online decision-support tool provides oncologists with expert recommendations on first-line and maintenance treatment options for non-small cell lung cancer patients based on their patients’ medical information and …

 

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I recently tweeted asking about favorite patients, physicians, and students on Twitter and was met with a plethora of shocked tweets at my inclusion of patients as potential Twitter interests. Perhaps other medical friends …

 

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