ENTRIES TAGGED "participatory medicine"
We must go beyond hype for incentives to provide data to researchers
The FDA order stopping 23andM3 from offering its genetic test kit strikes right into the heart of the major issue in health care reform: the tension between individual care and collective benefit. Health is not an individual matter. As I will show, we need each other. And beyond narrow regulatory questions, the 23andMe issue opens up the whole goal of information sharing and the funding of health care reform.
Donald Berwick discusses health care improvement: goals, exemplary organizations,and being at a turning point
A video interview with entrepreneur Colin Hill
Last week, a wide-ranging interview on data in health care took place between Dr. Donald Berwick and Colin Hill of GNS Healthcare. Dr. Berwick and Hill got together in the Cambridge, Mass. office of the Institute for Healthcare Improvement, a health care reform organization founded by Dr. Berwick, to discuss data issues related to O’Reilly’s upcoming Strata Rx conference.
Berwick returned to IHI after his year as administrator of Centers for Medicare & Medicaid Services. Throughout these changes he has maintained his stalwart advocacy for better patient care, a campaign that has always been based on a society’s and a profession’s moral responsibility. Even an IHI course for the “Patient Safety Executive” program puts “Building a just culture” on its agenda.
Among the topics Berwick and and Hill look at in these videos are the importance of transparency or “turning on the lights,” ways of learning from the health provider system itself as well as from clinical trials, types of personalized medicine, the impediments to collecting useful data that can improve care, exemplary organizations that deliver better healthcare, and how long change will take.
The full video appears below.
We need to provide data to patients in a form they can understand
Would you take a morning off from work to discuss health care costs and consumer empowerment in health care? Over a hundred people in the Boston area did so on Monday, May 6, for the conference “Empowering Healthcare Consumers: A Community Conversation Conference” at the Suffolk Law School. This fast-paced and wide-ranging conference lasted just long enough to show that hopes of empowering patients and cutting health care costs (which is the real agenda behind most of the conference organizers) run up against formidable hurdles–many involving the provision of data to these consumers.
O'Reilly conference brings together health care and data
O’Reilly’s first conference devoted to health care, Strata Rx, wrapped up earlier this week. Despite competing with at least three other conferences being held on the same week around the country on various aspects of health care and technology, we drew a crowd that filled the ballroom during keynotes and spent the breaks networking more hungrily than they attacked the (healthy) food provided throughout.
Springing from O’Reilly’s Strata series about the use of data to change business and society, Strata Rx explored many other directions in health care, as a peek at the schedule will show. The keynotes were filmed and will soon appear online. The unique perspectives offered by expert speakers is evident, but what’s hard is making sense of the two days as a whole.
In this article I’ll try to show the underlying threads that tied together the many sessions about data analytics, electronic records, disruption in the health care industry, 21st-century genetics research, patient empowerment, and other themes. The essential message from the leading practitioners at Strata Rx is ultimately that no one in health care (doctors, administrators, researchers, regulators, patients) can practice their discipline in isolation any more. We are all going to have to work together.
We can’t wait for insights from others, expecting researchers to hand us ideal treatment plans or doctors to make oracular judgments. The systems are all interconnected now. And if we want healthy people, not to mention sustainable health care costs, we will have to play our roles in these systems with nuance and sophistication.
But I’ll get to this insight by steps. Let’s look at some major themes of Strata Rx. Read more…
A doctor looks to software communities as inspiration for her own research
(The following article sprang from a collaboration between Andy Oram and Brigitte Piniewski to cover open source concepts in an upcoming book on health care. This book, titled “Wireless Health: Remaking of Medicine by Pervasive Technologies,” is edited by Professor Mehran Mehregany of Case Western Reserve University. and has an expected release date of February 2013. It is designed to provide the reader with the fundamental and practical knowledge necessary for an overall grasp of the field of wireless health. The approach is an integrated, multidisciplinary treatment of the subject by a team of leading topic experts. The selection here is part of a larger chapter by Brigitte Piniewski about personalized medicine and public health.)
Medical research and open source software have much to learn from each other. As software transforms the practice and delivery of medicine, the communities and development methods that have grown up around software–particularly free and open source software–also provide models that doctors and researchers can apply to their own work. Some of the principles that software communities can offer for spreading health throughout the population include these:
Like a living species, software evolves as code is updated and functionality is improved.
Software of low utility is dropped as users select better tools and drive forward functionality to meet new use cases.
Open source culture demonstrates how a transparent approach to sharing software practices enables problem areas to be identified and corrected accurately, cost-effectively, and at the pace of change.
HHS leadership should cause other organizations to open data.
Releasing public data can't fix the health care system by itself, but it provides tools as well as a model for data sharing.
Opening up clinical trials can accelerate findings, reveal more data
of value to future trials, and–perhaps most important–make
participants feel really good about doing it. An interview with OSCon
speaker Greg Biggers.