Thanks to SPM co-founder Joe Graedon of PeoplesPharmacy.com for this note about today’s special section in the Wall Street Journal on healthcare innovation. (Some of the content requires a subscription, but you can register for 8 weeks free.) Joe’s note, with additions…
The Wall Street Journal today has several articles of interest to SPM members.
1) Amy Dockser Marcus reports on Frustrated ALS patients creating/testing drugs
2) Lauro Landro reports on a “simple idea that is transforming health care“: quality of life – what patients care about:
“…now health-care providers are also adding a whole different, more subjective measure—how people feel about their condition and overall well-being. They’re pushing for programs where nurses or trained counselors meet with people and ask personal questions like: Is your condition inhibiting your life? Is it making you less happy? Does it make it hard to cope day to day? Then the counselors offer advice about managing those problems and follow up regularly.
The logic is simple. People are more likely to manage their condition properly when they have more accessible, personal goals.” (Emphasis added)
3) Amy Dockser Marcus again on “Patients as Partners.” Imagine that! the “power of collaboration” – about the C3N project at Cincinnati Children’s Hospital. (See intro below)
4) This is for [ACOR founder] Gilles Frydman: Melinda Beck writes: “Researchers Tune In to the Internet Buzz” –Â “Message-board chatter and Twitter feeds may provide a road map to areas that deserve further study.”
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Here’s the start of Marcus’s article. Notice the title and “the power of collaboration” –
Patients as Partners
An online network for sufferers of inflammatory bowel disease provides some clues to the power of collaboration
By AMY DOCKSER MARCUS
Doctors around the country have enlisted some new helpers in the fight against chronic disease—their patients.
A few years ago, a far-flung group of pediatric gastroenterologists set up an online network where they could share data and treatment strategies for children and adolescents with inflammatory bowel disease, in hopes of improving outcomes. It worked—up to a point. The remission rate jumped to 75% from 50% at some of the centers, but then hit a ceiling.
Some of the doctors raised a provocative question: Could they get even better results by bringing patients and parents into the effort?
Patients would experiment with new treatments and closely monitor how the regimens affected them day to day, then feed the data into the online network through computers or smartphones for doctors to examine. The patients could also use the network for things like social support, finding other patients who shared similar interests or lived near them.
“We were very focused on improving outcomes, but we were doing it without the families,” says Richard B. Colletti of the University of Vermont College of Medicine, director of the doctor-founded network. “Until parents and patients are true partners, you can’t get the best outcomes.” …
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Other articles in the section – I love that people are finally seeing that value in healthcare can arise from somewhere other than the doctor’s office and more treatment spending:
- The Wireless Revolution Hits Medicine: half-page interview with Eric Topol, author of the great new book The Creative Destruction of Medicine – “Eric Topol talks about innovations that promise to transform the delivery of health care, involving DNA sequencing, smartphone apps that use biosensors and high-definition imaging.”
- The Y Takes On Diabetes: “A diabetes-prevention program at the YMCA is helping people lose weight and could help companies save money. It’s also demonstrating the potential for a community-based organization to deliver a nationwide health-care intervention.”
- Numbers, Numbers and More Numbers: “Insurers, pharmacy benefit managers and health-care providers are pushing data analysis to new heights.”
- Meet George Jetson, M.D.: “Today’s health-care industry is making increasing use of Web-based virtual agents and avatars—computerized assistants that not only perform clerical duties but also dispense medical information.”
- Drug Discovery Gets an Upgrade: “Pharmaceutical companies are using powerful computers to increase their chance of success, manipulating molecules to create custom-made compounds.”
- If Only Heart Attacks Were Predictable: “Boston cardiologist James Muller, who founded InfraReDx, finds his quest to develop a test has been both long and elusive.”
- All the World Isn’t a Stage, but Some Med Classes Are: “The latest in medical education: simulations that offer hands-on training, the intense pressure of hospital work, and none of the risk. Video: Medical Manikins Simulate Real-Life Emergencies”
- Treating Wounds—the Holistic Way: “New treatments for chronic wounds have flooded the market. But a New York medical center may show that the most effective approach is preventing small problems from getting out of control in the first place.” My snarky thought: What?? That’s bad for the provider’s revenue! :-)
Thanks to Joe for directing me to Melinda Beck’s article “Researchers Tune In to the Internet Buzz“. It is a very thoughtful and interesting article that anyone interested in networked patients should read.
Unfortunately it starts with what I translate as “”It can be dangerous to be a moron (sorry, I meant patient) but it’s great for researchers that there are so many morons on the Internet”. (original text: “Looking for medical information on Internet message boards can be risky for consumers. Some of it is confusing, misleading or downright wrong. But for medical researchers, all that chatter can yield some valuable insights.”).
As long as serious articles start with that negative hook, we will face an army of doubtful health professionals. It is 2012. It is time to accept that the network effect is transforming our common ability to learn about any topic including medical ones. The invaluable input of expert patients should no longer be presented in a negative light. I am impatient! You should be too.