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.
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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.
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.
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.
Trends in Social Media in Health Care
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.
Social Media in Health Care – Engagement
View more presentations from John Sharp.
The Quantified Self in Healthcare
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.
Time to Revamp Clinical Trials
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.
Robotic Pancreas – Beyond Home Monitoring and the Quantified Self
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?
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.
