Archive for 2009

Journal of Participatory Medicine Launched

October 21, 2009

The Journal of Participatory Medicine was lauched today with a webinar by ePatient Dave. The webinar, titled “How Great EHRs can Empower Participatory Medicine” included a quote from my blog post stating that “If you hav,  not read the e-Patient White Paper, you do not understand the future of medicine.”
On a related note, Roni Zeiger of Google Health posted on Huffington Post “Mission: Transform the Culture of Medicine.” He notes that ” Participatory Medicine is a new approach that encourages and expects active patient involvement in all aspects of care.

In a more surprising development, ePatient Dave notes in today’s post a quote by Marcia Angell, MD, previously of the New England Journal of Medicine, stating “It is simply no longer possible to believe much of the clinical
research that is published, or to rely on the judgment of trusted
physicians or authoritative medical guidelines. I take no pleasure in
this conclusion, which I reached slowly and reluctantly over my two
decades as an editor of The New England Journal of Medicine.” This bombshell is part of an article by her from earlier this year titled, “Drug Companies & Doctors: A Story of Corruption” Dave calls this A quote I won’t soon forget.

How is this connected with paticipatory medicine and epatients? Perhaps a shift a trust from traditional culture of medicine to one which is patient-focused and patient driven rather than driven by money.

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Stakeholders in Health 2.0 Innovation

October 20, 2009

One question I received at the Health 2.0 conference in the Netherlands (Reshape 2009) was about stakeholders  in Health 2.0 initiatives. Stakeholders in any project depend on the project scope and potential impact. So the potential stakeholders include:

  • hospitals and healthcare providers
  • insurers including HMOs
  • entrepreneurs
  • patients and especially ePatients
  • Pharma and device companies.

Here is the slide presentation:

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How is Health 2.0 Different in Europe versus the US?

October 5, 2009

In planning for the Health 2.0 conference in Nijmegen, Netherlands, I am wonder what to expect approaches to Health 2.0. Here are a few differences I expect:

  1. Marketing – generally less important to EU hospitals with socialized medicine. US hospitals are interested in using social media to recruit new patients, while EU hospitals are more interested in connecting to patients in their district.
  2. A different attitude toward entrepreneurs. I expect a growing interest in startups in the Netherlands including in mobile health.
  3. Google and Google health – while there has been some opposition to Google Health in the UK, and opposition to some Google initiatives in the EU, what is the attitude toward Google Health as a platform for ehealth
  4. What is the current thinking of integrating eHealth and Health 2.0
  5. Health care Reform – not an issue in the Netherlands which is rated the best healthcare system in Europe versus the ongoing debate in the US as to whether health care is a basic human right.

I am looking forward to meeting my Dutch colleagues and others to find answers to these and new ideas.

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Guest Blog Post on e-Patients Blog

September 30, 2009

I was privileged to be asked by ePatientDave to post an enhanced version of my blog post on the Journal of Participatory Medicine on the e-Patients blog yesterday. I stand by my claim that everyone in health care needs to understand the e-patient movement and participatory medicine to understand the future of medicine.

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Forget Medical Privacy?

September 29, 2009

On the blog for PatientsLikeMe is a brief comment about a provocative statement by Wired Magazine to “Forget Medical Privacy.” Wired published this as part of their “12 Shocking Ideas That Will Change the World.”  PatientsLikeMe which is the only Health 2.0 site I know of that values openness and has an openness policy believing that it will contribute to health care instead of holding privacy so tightly that it inhibits the ability to use valuable clinical data. A video on the blog post addresses the question of openness directly: “Given my status, what is the best outcome I can achieve and how do I get there?”
From Wired: “And that lack of openness, Heywood argues, is making us sicker: With
data scarce, there’s no clear way for physicians to know what
treatments are working for other practitioners.”  In fact, hospitals are allowed to use data from the Electronic Medical Record with the approval of their Institutional Review Board.
At the Medicine 2.0 Congress, a award winning presentation by PatientsLikeMe demonstrated how they can utilize data shared by patients to quickly address drug side effects and other commonly shared problems. A combination of using existing data, such as, from an EMR and patient shared data, such as, from social networking sites, can certainly accelerate medical research while not totally abandoning privacy.

Technorati: Health 2.0

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Google Scholar – A Personal Journey

September 26, 2009

The Krafty Librarian has taken on Google Scholar and discusses the good and bad of its search results from a medical librarian’s perspective. This led me on a vanity search of my own publications. Good news – by searching for “Sharp JW” & “Cleveland Clinic” most of my previous publications came up. What was interesting was to see citations. I had no idea how may articles and books used some of my publications. For instance, a search of “Sharp JW” & “Prostate Cancer” shows many citations in books especially from some of my quality of life and internet and cancer articles. Also came across an abstract on LVADs and quality of life I had forgotten about.

While there may be some limitations of Google Scholar, some of the features are a real plus.

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Journal of Participatory Medicine and e-Patients

September 25, 2009

If you have not read the e-Patient White Paper, you do not understand the future of medicine. Being an e-Patient is beyond being empowered. The subtitle, How they can help us heal healthcare, describes the potential for a revolution of change.
Now comes the Journal of Participatory Medicine to fill a gap in journals which acknowledge the active role of the patient in current medical practice. While other journals, such as, the Journal of Medical Internet Research, publish articles on patient participation in health care and social media, but a single journal devoted to this topic will be a welcome addition and make the topic more officially sanctioned as a valid field of medical study. The editorial board is very impression and lends an important boost to this new journal.

Technorati: Health 2.0

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HealthCamp – Incubator for Innovation

September 24, 2009

In Toronto last week, in addition to Medicine 2.0, I attended my first HealthCamp, sponsored by MyHealthInnovaton, aka, Innovation Cell. Using an unconference format, HealthCamp creates an environment for creative thinking with the attendees creating the agenda for the day. Great ideas were everrywhere – from pitches on new startups to ideas which are in their infancy, the approach is invigorating. HealthCamps have now been attended by over 1000 participants. I hope the movement will continue to spread. Maybe its time for one in Ohio.
Upcoming HealthCamp events.

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Medicine 2.0 Congress in Toronto – E-Patients take the lead

September 23, 2009

Having attended the Medicine 2.0 Congress in Toronto last week, the enduring theme of e-Patients as full participants in health care with full rights to their data was apparent. ePatient Dave led off with the keynote and sent me back to the ePatient white paper, particularly, the research section. More on that later.
My part is recorded here:

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Convergence of eHealth and Health 2.0?

September 15, 2009

While some create strong distinctions between the terms eHealth and Health 2.0, others use them interchangeably. eHealth clearly came before Health 2.0 but is it just an evolution from one to the other. The general consensus seems to be that ehealth is a broad term including electronic medical records, personal health records and other health care tools. Some include mobile devices, home monitoring and telemedicine within ehealth. Health 2.0 evolved more recently and focuses on Web 2.0 tools especially social media tools and their use in health care.
Are they converging or is there an opportunity for convergence? They need to converge because in the future ePatients will demand a single view of their health both from PHRs and social media. Perhaps it will look something like Google Wave.

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