Posts Tagged ‘epatients’
May 7, 2010
Yesterday I had two content successes. My article Social Media in Health Care: Barriers and Future Trends was published in the Perspectives section of this online newsletter. In it I propose 3 trends to watch for:
- Managing a conversation;
- Engaging e-patients;
- Convergence with personal health records; and
- Social media for providers
I will be interested in your comments on this blog or via Twitter (@JohnSharp).
Yesterday I also spoke at the J. Boye Conference in Philadelphia on Social Media in Health Care: Humble Beginnings to Patient Engagement. This conference is more intimate and interactive than most with specific tracks for each day. I spent the first day in the Higher Education track and found many similarities with the struggles we in health care experience. The second day had an eHealth track that included Jane Sarasohn-Kahn who had just returned from a Senate Hearing on Mobile Health.
Check out my slides below.Share this:
May 3, 2010
In the New York Times Sunday Magazine, an article by a Wired editor, talks about the growing trend of the Quantified Self, or the data driven life. Why is this becoming a real trend? “Four things changed.
- electronic sensors got smaller and better.
- people started carrying powerful computing devices, typically disguised as mobile phones.
- social media made it seem normal to share everything.
- we began to get an inkling of the rise of a global superintelligence known as the cloud.”
While more people are creating catalogs of various aspects of their lives, some specific healthcare examples are cited including Medhelp.org “where more than 30,000 new personal tracking projects are started by users every month” and CureTogether.
Also, in FastCompany, an article title Our Bodies, Our Quantified Selves, they note that “there may actually be some meaningful upsides to this radical transparency.” Particularly the opportunity for medical research on this exponentially growing volume of data.
To me, this is the obvious next big thing in health care. The only question is how to channel the energy of this new trend into meaningful information for the individual and society.Share this:
April 25, 2010
In an editorial today in the New York Times, the editors call for major changes in how cancer clinical trials should be run. Just two facts are enough to document the problem:
- The average time between developing the concept for a study and getting it started is about 2.5 years.
- about 40 percent of all advanced clinical trials sponsored by the Cancer Institute are never completed
One of the recommendations is to reduce the number of cooperative groups and the levels of approval required.
In a related post on The Medical Quack, there is discussion of the clinical trial experience for the patient with an excellent video below.
In both cases what I hope we all come to realize soon is the lethal lag time – a articulate by e-patient White Paper – these long lead time for studies can prove lethal for those waiting for new treatments.Share this:
April 19, 2010
Just as home monitoring using medical devices is beginning to gain traction and be reimbursed, e-visits as well and the movement toward the Quantified Self, implanted devices are now added to the mix. In a new article in Wired Magazine, The Robotic Pancreas, One man’s quest to put millions of diabetics on autopilot, implanted devices move into the popular press. After a successful trial of 17 teens at Yale, the next step is FDA approval. Medtronic is supporting the effort. There is already approval in some European countries and the devices does have an low glucose suspend feature to protect the patient. The FDA is accelerating the availability of an artificial pancreas; will it really take the predicted 5 years for approval and broadened use? What will be the next device which combines the quantified self with a medical device?Share this:
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.Share this:
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?Share this:
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.Share this:
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.Share this:
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.Share this:
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.Share this: