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Collaborating for Change in Healthcare


Guest Post By Don Tapscott, Curator Social Media Week

I’m enthusiastic about taking on the role of “Curator” for Social Media Week. In the run-up to my kickoff speech on Feb 13 to cities around the world, I’m writing a series of articles to stimulate thinking and discussion in our global community. The topic of this post is healthcare.

Despite the advancements of modern medicine, our basic approach to healthcare has remained unchanged for centuries. It assumes that physicians are smart and patients aren’t. Doctors wait in their office or hospital for sick people to come to them in order to be told what to do. Traditionally, patients have been passive and ill-informed, playing little or no role in deciding their own treatment. As one physician puts it: “Today’s healthcare institutions are like the old media: centralized, one-way, immutable and controlled by the people who created and delivered it. Patients are passive recipients.” In other words, the health system is broken.

Now, courtesy of the Internet, there are tools that allow us to take more responsibility for our own health, and for patients to collaborate with their doctors and, equally important, other patients.

All of us, including newborns, should have our own online Personal Health Page. Just as Facebook keeps you updated on your friends’ activities, your Health Page would keep you up to date on issues affecting your health. You could have links to organizations such as Weight Watchers or a local diabetes support group. You could create a community or join medical “causes.” And low-cost or free applications could help you measure your own health, prediagnose a sick child or test for possible drug interactions.

By moving the heart of our healthcare system online, and making each of us more informed and involved in our health, we would get a lot more bang for our healthcare buck. Knowing what’s happening in your body motivates you to change your behavior. If you weigh yourself daily, for instance, you’ll be more successful at shedding pounds and keeping them off than if you weigh in weekly.

When we are better informed about our health, we make fewer trips to the emergency department, we don’t make unnecessary doctors’ appointments and we require fewer costly home-nurse visits.

Some early examples of this kind of thinking can already be seen online. Users of MedHelp.com, a popular online health community, are able to track more than 1,500 symptoms and treatments on a daily basis using iPhone apps that cover both general health conditions, such as weight loss and allergies, and very specific disorders, such as infertility and diabetes. If they want, patients can share this information on a continuing basis with their doctors or caregivers.

Doctors should do much more to encourage patients to take advantage of the resources available in online health care communities. A good example is PatientsLikeMe.com, a vibrant health care community whose members suffer from debilitating chronic conditions such as ALS, Parkinson’s and bipolar disorder. Members use the site to track the evolution and management of their diseases. But rather than keep all their data private, many members share it with the patient community and the medical research community.

This openness ultimately benefits everyone. Patients can learn what’s working and, in consultation with their doctors, adjust their own treatment plans. Drug companies can use anonymous patient data to evaluate new treatments and thus bring them to market more quickly. “People think we are a social networking site,” says PatientsLikeMe co-founder Ben Heywood. “But we’re an open medical framework. This is a large-scale research project.”

Earlier this week (Nov. 5, 2011), PatientsLikeMe and R.A.R.E Project, a non-profit advocacy and support group for patients with all rare diseases, announced a new partnership to find and connect 1 million rare disease patients to share and learn everything possible about their conditions. The organizations are launching an international rare disease awareness campaign in 2012.

“There are 35 million patients in the U.S. with 7,000+ rare diseases and we want to find them, connect them and support them in sharing and learning by their specific disease and across all rare diseases,” says Dean Suhr, Chief Innovation and Community Development Officer at R.A.R.E. “We’re excited to work with PatientsLikeMe because their open patient registry allows patients to contribute to research, while getting immediate benefits, like improved quality of life, from sharing this information with others.”

Of course, we need the buy-in of the biggest players – namely government and insurers – to help maximize these opportunities and help people from becoming needlessly sick.

I encourage readers to join the discussion on how healthcare can be more collaborative and effective.

For three decades Don Tapscott has been the world’s leading thinker about the impact of the digital revolution on business and society. He is the author of 14 books, most recently Grown Up Digital: How the Net Generation is Changing Your World and with Anthony D Williams: Macrowikinomics: Rebooting Business and the World. You can follow Don on Twitter at @DTapscott.

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Comments
  • http://twitter.com/benfortney Ben Fortney

    Unlock the data, so people can analyze it in new ways.  Dr. Jeffery Brenner is doing that in Camden, NJ: http://www.pbs.org/wgbh/pages/frontline/doctor-hotspot/

  • http://www.steviebethwellnes.com PBethel

    In 1997, my daughter at age 18 was diagnosed with lupus.  She is under the care of at least 6 different doctors at 4 different hospitals. The source of my greatest frustration through the years has been the lack of effective collaboration between the doctors.  Each is caring and supportive, and I have unsuccessfully  tried to manage the collaboration.  She is on at least 12 medications which we haul from one doctor’s office or emergency room to the other.  Many times we are rushing and forget to take the meds or the list which we maintain.  I am certain that her care would be greatly enhanced by more efficient and effective collaboration between her doctors.  I firmly believe that there’s someone somewhere out there who can help her, and leveraging the power of the internet to improve heathcare is a “must do.”  Patients and their pushy moms :) should have an informed role in determining their treatment.   

  • Pingback: Collaborating for Change in Healthcare | Moxie Insight

  • R. C. McRee

    I believe in open access but I do worry about the discriminatory practices this trend could encourage. How can I be sure that my prior heart condition, fixed back in February of 2009, won’t be used by a future employer or insurer to deny me a job or coverage. I am eager to participate in the large scale research of someone like Ben Heywood if he provides assurances that my confidentiality will be maintained. Regardless, I’ll be going to his site and figuring out how social networking helps me care for myself and my family.  

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