Posts Tagged ‘epatients’
Patient-Centerness in Healthcare
October 24, 2012
Two recent items emphasize this them. First is an interview with James Merlino, MD, Chief Experience Officer at Cleveland Clinic and e-Patient Dave at TEDMED.
The interview asks pointed questions about Improving Doctor-Patient Communication from the provider and patient perspective. ePatient Dave gives Cleveland Clinic a big endorsement. See Dave’s blog post about the video.
Second is a post by Dr. Cosgrove, CEO of Cleveland Clinic on One Question that Changed our Organization or How Cleveland Clinic went from doctor-centered to patient-centered. It is a description of a water-shed moment. “Yes we do teach empathy. We’ve made it part of our culture.”
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Who Owns Your Data?
January 23, 2012
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.
Share this:e-Patients, Quantified Self and Self-Efficacy; Self-Monitoring Through Technology
November 8, 2011
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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Health Barometer – Youth Lead the Way
October 7, 2011
In an excellent presentation on the Health Barometer, international survey results, exploreing “how social interaction and technology can spread good health. One of the findings is that the Activitist in online health who use the internet for health information at least weekly, are predominantly 18-30 year olds. This is consistent with other observations, such as, the Forrester Research Case study: Radboud Hospital Supports Young Cancer Patients With An Online Community. Also, the experience of Crohnology.com, founded by a young Crohn’s survivor who wanted to share his experience with others.
Here is the slide deck:
Share this:Guest Blog Post on e-Patients.net
September 10, 2011
I was invited to write a guest post on the ONC Query Health initiate for e-Patients.net.
You can read it here.
Thanks to @ePateintDave for the enthusiastic invitation.
Share this:The Future of Coding
November 30, 2010
In Wired magazine this month, Clive Thompson talks about his own experience in developing a mobile app. Coding for the Masses is the new reality. In a way, many in the Web 2.0 world have been doing coding by creating blogs, wikis, communities such as Ning, with little or no technical training. Now tools for mobile apps allow for building tools for the handheld devices. He notes Scratch to Google’s App Inventor as the enablers of this new reality.
Related is the book Program or Be Programmed by Douglas Rushkoff. The same concept of empowerment comes through. More once I read the book. Implications for healthcare? Obvious – epatients going beyond advocacy to become app developers. Physicians and nurses developing apps for their own use or for their patients. Check out this post about creating a journal club with Google Reader and Facebook. Not mobile yet but maybe for the iPad?
Check out the HIMSS HIT X.O conference track which include HIT Geeks Got Talent? contest – live programming. I was on the planning committee for this innovative program track.
Also, from Wired magazine check out the redesign of medical test reports.
Share this:Social Media Season
September 28, 2010
It must be Fall because the conference season is ramping up. Two social media conferences going on at the same time:
- ePatient 2010 in Philadelphia with the likes of ePatient Dave and Susannah Fox
- Health Care Social Media Summit in Jacksonville, Fl
Notable is the announcement by Radboud University Nijmegen Medical Centre in the Netherlands and the Mayo Clinic of a Global Social Media Health Network.
All of this reflects the maturity of the healthcare social media, ePatient and Health 2.0 community. A kind of convergence is occurring bringing technology to the focus on the patient with full participation of the epatient. Greater attention by mainstream media and the scientific community is only accelerating the movement – see last week’s Scientific American Pathways article, “The Rise of the Empowered Patient“, which quotes Lucien Engelen of Radboud University among others. Can this convergence be sustained? Will the enthusiasm and energy be focused to create real change in healthcare? This level of optimism can only do good.
Share this:Curing Cancer Clinical Trials
June 17, 2010
The Institute of Medicine has issued another groundbreaking report, this time on cancer clinical trials. An editorial about the report in the New England Journal of Medicine titled, Cancer Clinical Trials — A Chronic but Curable Crisis, makes some bold statements, such as, “the program is bloated, cumbersome, inefficient.” Slow approval processes with multiple layers and poor recruitment levels are symptomatic.
Recommended changes include improving:
- the speed and efficiency of the design,
- launch, and conduct of trials;
- innovation in science and trial design;
- trial prioritization,selection, support, and completion; and
- incentives for patient and physician participation
The full IOM report lays out participation of key stakeholders, particularly patients and physicians. The emphasis on patient participation is strong and reminiscent of the e-Patient White Paper. While the concept of the Lethal Lag Time is not directly mentioned, the overtones can be heard. I recommend this report as key to the future of the conduct of clinical trials including innovative approaches.
Share this:Partnerships with Online Communities – The Long Tail
June 4, 2010
Chris Anderson in writing Long Tail: Why the Future of Business Is Selling Less of More, popularized this concept particularly in viewing markets in the wired world. How does it apply to health care? Probably in many ways. But specifically it came to mind in thinking about the relationship of provider organizations like hospitals and online communities. While many online communities may attract large numbers, for instance, in diabetes and breast cancer, many more condition specific communities are relatively small even though they may have a national or international scope. Gilles Frydman of ACOR recognized this early by encouraging the proliferation of online communities through his listserv.
Provider organizations are moving into social media but struggling to identify meaningful ways to connect with their patients through Facebook and Twitter. Perhaps the struggle has to do with a broad stroke strategy of trying to appeal to all comers. The real opportunity is in the Long Tail of small online communities who know the best hospitals, information sources, physicians for their disease or condition and talk to each other about it all the time. Certainly PatientsLikeMe.com has found this in the specialize community of ALS and others like it have found the value in the long tail. What about groups like Marfan Syndrome or others that fall under the umbrella of the National Organization of Rare Diseases (NORD). Specialist who treat these diseases in the long tail of healthcare have a unique opportunity to become online partners potentially contributing to blogs, social networks or listservs and inviting patients to post blogs about their experiences on the hospital’s blog or Facebook page. There are many possibilities to explore – meetups, suggestions for improving care – hope to see some take up this challenge.
Share this:The Quantified Self in Healthcare – Part 2
May 10, 2010
More evidence of this movement continues to emerge. For instance, I came across the Philips DirectLife device today which can record a number of activity parameters to quantify one’s life. In an article in the Linux Journal, of all places, there is an article title, Now Data Gets. Personal. The author cites Alexandra Carmichael of CureTogether and the Quantified Self Community as a prime example. The article points back to an earlier one in the same journal called The Patient as the Platform. The author proposes that through the use of PHRs controlled by patients, such as, Google Health, the patient could be center of health information rather than the provider or payer. This article from 2008 essentially proposes a solution for health information exchange without costly state or national initiatives.
The combination of the quantified self and the patient as the platform can potentially create a future where rich information is controlled by the patient and shared with providers to enhance personal wellness and treat conditions. Adding social networking with like patients creates a powerful trio of technology for the e-patient.
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