John Sharp is an IT Manager for a major medical center in Northeast Ohio. Areas of expertise include: ehealth, personal health records, Web 2.0 technologies, social media and project management. He is active in the Healthcare Information Management and Systems Society and the American Medical Informatics Association. The opinions expressed on this blog are those of the author.
Posts Tagged ‘epatients’
Review of Chasing Medical Miracles
February 21, 2010
The subtitle of this 2009 book by Alex O’Meara is “The Promise and Perils of Clinical Trials.” O’Meara combines this personal experience of a clinical trial using stem cells for Type I Diabetes. He reviews the risky world of clinical trials beginning with large for-profit research centers who recruit healthy volunteers and stories of the volunteers who participate for a living or to supplement their income. Some questionable situations are noted including the recruitment of low income and alcoholic men in Indianapolis and elsewhere. He details some famous cases of unethical trials which landed in the courts including those involving genetics and conflicts of interest. Fortunately, some of these potential abuses are more carefully scrutinized. He spends two chapters on international clinical trials which have shifted much of the work to developing countries with a real focus on the issues in Uganda as case study. The fact that drug companies provide medical care in addition to clinical trials creates a dilemma for developing countries with small healthcare budgets.
One outstanding story related to a patient’s right to their own data is from a Hepatitis C trial in which the subjects were not allowed to receive information on their viral load during the study as a way of discouraging drop outs. However, this in itself seems unethical in that the patient would not know whether the treatment was effective or ineffective and whether their disease was progressing. I hope that Institutional Review Boards would not approve such a procedure for trials involving serious illness. Much of the book looks at the issues with placebo controlled studies and blinding – it raises many questions which are yet to be resolved by medical scientist and bioethicists.
I would recommend this book for anyone involved in clinical research, whether in Pharma, medicine or as a patient.
Decision Tree and the Quantified Self
February 15, 2010
The article in Wired on Decision Trees and the new book also by Thomas Goetz has generated a greater interest in participatory medicine and quantifying one’s life and health.
The title of the first chapter says it all: Living by the Numbers – How alot of science and a little self awareness can give you control of your health.
Brian Ahier addresses these issues as well in his post on “Data Not Drugs: Taking Control of Your Health in the Age of Genetics.” While pointing out the host of tools available to manage your health, everything from WolframAlpha to GetUpAndMove, he discusses earlier adopters who will lead the way, knowing not only their genetic risk but also quantifiy their daily health status. He notes that with few blockbuster drugs in the pipeline, perhaps this is the future of healthcare. Can the quantified self, enabled by health promotional tools which get easier to use each day, have a larger impact on health than the next lipitor?
Health Data Rights Get Broader National Attention
January 14, 2010
First, I need to applaud CNN for creating a place to focus on the Empowered Patient. And today a special article on a patient’s right to their own data and citing two prominent ePatients – Jen McCabe and Dave deBronkart. “Lack of information kills people” – the article details several anecdotal cases of how patients were injured or died as a result of lack of correct data and medical errors. The patient having their data certainly can add to patient safety – why not have more eyes looking at patient data, especially when it about one’s own body. Looking forward to more features in the Empowered Patient.
Interview on Social Media
January 5, 2010
My interview by Hope Leman on the Significant Science blog just today was rediscovered on Twitter resulting in significant activity. The interview, titled ”Maneuvering Medical Institutions Through the Wild Waters of Social Media” and covered the range of activities in social media at the Cleveland Clinic. This interview emerged from my presentation at Medicine 2.0 “Hospital Adoption of Medicine 2.0: A Culture Change.”
While social media strategy continue to evolve, new opportunities present themselves. Particularly significant shifts are toward participatory medicine and e-patients. As noted previously, I will continue to post about participatory research and the lethal lag time in research which may only change from patient-initiated advocacy.
Thanks again to all who have read the interview and follow this blog and my twitter posts.
The Quantified Self, ePatients and Participatory Medicine
December 29, 2009
Kevin Kelly has posted “The Quantified Self, Tools for knowing yourself and your body” which links to a more extensive paper entitled, “A Billion Little Experiments,” The concept of the Quantified Self points to patient empowerment and specifically ePatient activism which takes control of one’s health or illness by understanding one’s body and its processes. It seems that communities, such as, PatientsLikeMe and OrganizedWisdom, provide a real opportunity for quantifying life and sharing that life in real time. Quantifying the self opens the door to participatory medicine – by knowing yourself, you can engage your physician in a dialog on what you know about your body. We are a billion little experiments.
I hope that the concept of the Quantified Self becomes part of the medical lexicon along with ePatients and participatory medicine.
Updated Blog with Updated Thoughts
December 27, 2009
Thanks to my daughter, I have moved my blog to WordPress and have an updated skin. This will certainly encourage me to post more frequently in the new year. The focus of my posts in the coming year will include:
- e-Patients, participatory medicine and particularly the lethal lag time in research
- Health 2.0 specifically research related tools both for patients and providers
- eHealth and its convergence with Health 2.0, mHealth and telemedicine
- health policy issues including comparative effectiveness research and medical home, two key directions in research and policy
What for changes to the blog as I get used to WordPress and add widgets which are helpful to my readers.
Thanks for reading and share your thoughts about the new year in ehealth and Health 2.0.
Lethal Lag Time: Concerns, Possible Solutions
November 24, 2009
In a follow up from yesterday’s post, I came across an article in the Journal of the National Cancer Institute on a drug funding issue force one of the major cooperative oncology groups to modify how they approach clinical trials. The article, titled,
“Costly Cancer Drugs Trigger Proposals To Modify Clinical Trial Design” notes a new drug costing up to $9000 per month per patient. In doing the economic analysis using formulas like Quality Adjust Life Years (QALYs), the real value of these treatments is being questioned.
On the brighter side, two potential solutions to long lag times for research are a search tool and a predictive modeling tool.
- explorys is a new spin off from the Cleveland Clinic which “enables users to collaborate, search, and tag meaningful correlations from treatments and outcomes within patient populations while maintaining security and privacy.” Hoping to get a demo soon.
- Archimedes Model which is reviewed recently in Business Week
and in Wired Magazine this month. which is a predictive modeling tool which is a full-scale simulation model of human physiology, diseases, behaviors, interventions, and healthcare systems.
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.
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