"participatory medicine" entries

Where did the issue of health data exchange disappear to?

More visible at Health Privacy Summit than Health Datapalooza.

On the first morning of the biggest conference on data in health care–the Health Datapalooza in Washington, DC–newspapers reported a bill allowing the Department of Veterans Affairs to outsource more of its care, sending veterans to private health care providers to relieve its burdensome shortage of doctors.

There has been extensive talk about the scandals at the VA and remedies for them, including the political and financial ramifications of partial privatization. Republicans have suggested it for some time, but for the solution to be picked up by socialist Independent Senator Bernie Sanders clinches the matter. What no one has pointed out yet, however–and what makes this development relevant to the Datapalooza–is that such a reform will make the free flow of patient information between providers more crucial than ever.

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Citizens as partners in the use of clinical data

A Knowledge Currency Exchange for health and wellness

This article was written together with Mike Kellen, Director of Technology at Sage Bionetworks, and Christine Suver, Senior Scientist at Sage Bionetworks.

The current push towards patient engagement, when clinical researchers trace the outcomes of using pharmaceuticals or other treatments, is a crucial first step towards rewiring the medical-industrial complex with the citizen at the center. For far too long, clinicians, investigators, the government, and private funders have been the key decision makers. The citizen has been at best a research “subject,”and far too often simply a resource from which data and samples can be extracted. The average participant in clinical study never receives the outcomes of the study, never has contact with those analyzing the data, never knows where her samples flow over time (witness the famous story of Henrietta Lacks), and until the past year didn’t even have access to the published research without paying a hefty rental fee.

This is changing. The recent grants by the Patient-Centered Outcomes Research Institute (PCORI) are the most visible evidence of change, but throughout the medical system one finds green shoots of direct patient engagement. Read more…

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Changes in the health care system driven by self-service and DIY health

Apps reflect the public's pressing health concerns

Health care is migrating from the bricks-and-mortar doctor’s office or care clinic to the person him or herself at home and on-the-go–where people live, work, play, and pray. As people take on more do-it-yourself (DIY) approaches to everyday life–investing money on financial services websites, booking airline tickets and hotel rooms online, and securing dinner reservations via OpenTable–many also ask why they can’t have more convenient access to health care, like emailing doctors and looking into lab test results in digital personal health records.

The public clamor for digital outreach by health providers

85% of U.S. health consumers say that email, text messages, and voicemail are at least as helpful as in-person or phone conversations with health providers, according to the Healthy World study, Technology Beyond the Exam Room by TeleVox. Furthermore, one in three consumers admits to being more honest when talking about medical needs via automated voice response systems, emails, or texts than face-to-face with a health provider.

And three in ten consumers believe that receiving digital health care communications from providers—such as texts, voicemail, or email—would build trust with their providers. Half of people also say they’d feel more valued as a patient via digital health communications. When people look to engage in health with an organization, the most important enabling factors are trust and authenticity.

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Visualizing Health IT: A holistic overview

O'Reilly report covers major trends and tries to connect the neurons

If visualization is key to comprehending data, the field of health IT calls for better visualization. I am not talking here of pretty charts and animations. I am talking, rather, of a holistic, unified understanding of the bustle taking place in different corners of health: the collection and analysis of genetic data, the design of slim medical devices that replace refrigerator-sized pieces of equipment, the data crunching at hospitals delving into demographic data to identify at-risk patients.

There is no dearth of health reformers offering their visions for patient engagement, information exchange, better public health, and disruptive change to health industries. But they often accept too freely the promise of technology, without grasping how difficult the technical implementations of their reforms would be. Furthermore, no document I have found pulls together the various trends in technology and explores their interrelationships.

I have tried to fill this gap with a recently released report: The Information Technology Fix for Health: Barriers and Pathways to the Use of Information Technology for Better Health Care. This posting describes some of the issues it covers.

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23andMe flap at FDA indicates fundamental dilemma in health reform

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.

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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.

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Patients matter most, but technology matters a lot

Report from the Health Data Forum

Computing practices that used to be religated to experimental outposts are now taking up residence at the center of the health care field. From natural language processing to machine learning to predictive modeling, you see people promising at the health data forum (Health Datapalooza IV) to do it in production environments.

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The elusive quest to transform healthcare through patient empowerment

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.
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How to open an industry: data points from Strata Rx

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…

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Open source software as a model for health care

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.

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