eHealth » Medicine 2.0

Who Owns Your Data?

John Sharp — Tue, 24 Jan 2012 03:39:19 +0000

In a radio interview from Inside the Media, Hugo Campos, an e-Patient with an implanted defibrillator (ICD), talked about his desire to have the data from his device. His logical argument is that the device is now part of his body and so he should have the right to the data from the device. So far he has been unsuccessful in getting his provider or the manufacturer to assist him with this. While rights to one’s own health data is becoming a reality through the Affordable Care Act and Meaningful Use and through initiatives like the Blue Button, device data is new territory. One could argue that the data is too complex for the lay person to analyze but that is the same argument which was made not so long ago about medical records in general. With the growth of apps and health information on the web, complex medical data is becoming more accessible.

This new territory needs more discussion. See the comments on the podcast page. Also, you can follow Hugo on the ICD Users blog.

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Year in Review – Travel

John Sharp — Tue, 27 Dec 2011 04:31:05 +0000

It was a big year for traveling to conferences:

February – HIMSS Annual Conference in Orlando – spoke at the Social Media center twice and presented on a panel on social media
March – AMIA Clinical Research Informatics Summit in San Francisco. Two podium presentations (CKD Registry and REDCap business model) and two posters
April – attended TEDx Maastricht in the Netherlands and a side trip to UMC Radboud in Nimegen.
April – ACRT meeting (Association for Clinical Research Training) in Washington, DC – panel presentation on REDCap.
May – Patient Experience Summit at Cleveland Clinic with Enoch Choi presenting
June – consulting at a hospital in Michigan on data warehousing
September – Medicine 2.0 Congress in Palo Alto, CA. Poster presentation
October – American Association of Medical Colleges meeting on Big Data in Washington, DC
October – Clinical and Translational Science Awards Informatics meeting at the National Institutes of Health. Bethesda, MD – poster presentation
October – Panel at Case Medical School, Cleveland on Social Media in Clinical Trials
November – Senior Workers Conference in Minneapolis, MN – presentation on Social Media and Electronic Medical Records
December – Center for Health Services Research and Policy at MetroHealth Medical Center, Cleveland, on Disease Registries using EMR Data

Most of these are posted on SlideShare. Looking forward to many opportunities in 2012 as well.

Next post – Accomplishments in 2011

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e-Patients, Quantified Self and Self-Efficacy; Self-Monitoring Through Technology

John Sharp — Tue, 08 Nov 2011 14:13:43 +0000

New featured blog post of mine on HealthWorksCollective. Would be interested in comments especially from the e-Patient and Quantified Health communities.

_______________________________________________________________________________

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Social Media Can Change HealthCare – Medicine 2.0 Conference Takeaway

John Sharp — Mon, 26 Sep 2011 02:04:06 +0000

I have a new blog post on HealthWorks Collective which is a report on some major themes I observed at the Medicine 2.0 Congress at Stanford this month.

behavior change is possible through social medial and mobile apps
Social media can change how healthcare is delivered in a patient-centric, participatory medicine approach.

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The Healthcare Social Media Landscape

John Sharp — Fri, 03 Jun 2011 02:33:37 +0000

Here is a slide show I created reflecting on the different communities developing in this space. Although each emerged on its own, there is certainly collaborative projects and people across these communities and a sense of mutual support. I myself attended the first Health 2.0 conference, then Medicine 2.0 and also part of the e-Patient community. More conferences occur each year both in the US and Europe; two recent examples are TEDx Maastricht which had a health focus and Doctors 2.0 taking place later this month in Paris. Also, the Quantified Self movement is coming to health care as well.

I’d be interested in other’s opinions on this.

Health care social media communities

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TEDx Maastricht – The Future of Health

John Sharp — Fri, 01 Apr 2011 19:17:06 +0000

In anticipation of the International event on April 4, I wanted to share some links. Although many conferences which claim to be futurist meccas for healthcare, this one is bringing together a group of people including a very strong patient perspective which all are thinking innovation. Also, it is completely full and is being simulcasted to several countries.

Website, speakers
Some of the attendees via a tool which exploits LinkedIn
mashup on VPRO
Simulcast schedule – I am being interviewed at 11:15 local time

Follow tweets at #tedxmaastricht

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Health 2.0 – a Double Dutch Treat

John Sharp — Thu, 01 Jul 2010 02:33:21 +0000

Lucien Engelen of Radboud University, Nijmegen, NL, and his team (Tom Van De Belt is the first author) have struck two goals in the world cup of Health 2.0. In the Journal of Medical Internet Research, they have published “Definition of Health 2.0 and Medicine 2.0: A Systematic Review.” This broad review of published literature and blogs included a post by me and many others. They note no consensus on these definitions but some recurring themes:

Web 2.0/technology
patients
professionals
social networking
health information/content
collaboration
health care change.

The second publication is “A Little Booklet About Health 2.0“, originally available in Dutch, now in English for the Kindle, soon to have an English paper edition. This modest title provides a good introduction to Health 2.0 for beginners and those who may have concerns about venturing into this growing field. It is a quick read and dives right into the key topics, using the example of MyCareNet, an innovative interactive platform for IVF patients and providers and leads us to the concept of participatory healthcare and bringing in the patient’s perspective on service design.

These two publications demonstrate some of the growing Dutch leadership in Health 2.0 which will culminate in the Medicine 2.0 conference in Maastricht this November and the TEDxMaastricht program.

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HealthCamp – Incubator for Innovation

John Sharp — Thu, 24 Sep 2009 06:06:00 +0000

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

John Sharp — Wed, 23 Sep 2009 05:50:00 +0000

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:

a photo of me presenting
Medicine 2.0 blog post on what I said
My delicious links related to the presentation
and my slides:

Hospital Adoption Of Medicine 2.0

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The Future of Scientific Journals

John Sharp — Fri, 19 Dec 2008 07:55:00 +0000

From ReadWriteWeb, there is an article titled, “Scientific Journal to Authors: Publish in Wikipedia or Perish.” It is a report from the journal RNA Biology which now requires a simultaneous submission to Wikipedia. The initial submission to Wikipedia is also peer-reviewed but after that it can be edited as other entries. This is a brave new world of medical publishing. First there was online journals and now Wikipedia entries. If the entries can be edited, what does that mean for the future of peer reviewed journals?

Another new journal tool in beta is MyFavoriteJournals. It enables managing multiple journals by showing the covers and a click through to the most recent table of contents with links to abstracts using the PubMed API. Worth testing out.

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