ENTRIES TAGGED "health IT"
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.
Bio-IT World shows what is possible and what is being accomplished
If your data consists of one million samples, but only 100 have the characteristics you’re looking for, and if each of the million samples contains 250,000 attributes, each of which is built of thousands of basic elements, you have a big data problem. This is kind of challenge faced by the 2,700 Bio-IT World attendees, who discover genetic interactions and create drugs for the rest of us.
Often they are looking for rare (orphan) diseases, or for cohorts who share a rare combination of genetic factors that require a unique treatment. The data sets get huge, particularly when the researchers start studying proteomics (the proteins active in the patients’ bodies).
So last week I took the subway downtown and crossed the two wind- and rain-whipped bridges that the city of Boston built to connect to the World Trade Center. I mingled for a day with attendees and exhibitors to find what data-related challenges they’re facing and what the latest solutions are. Here are some of the major themes I turned up.
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…
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.
New report covers areas of innovation and their difficulties
O’Reilly recently released a report I wrote called The Information Technology Fix for Health: Barriers and Pathways to the Use of Information Technology for Better Health Care. Along with our book Hacking Healthcare, I hope this report helps programmers who are curious about Health IT see what they need to learn and what they in turn can contribute to the field.
Computers in health are a potentially lucrative domain, to be sure, given a health care system through which $2.8 trillion, or $8.915 per person, passes through each year in the US alone. Interest by venture capitalists ebbs and flows, but the impetus to creative technological hacking is strong, as shown by the large number of challenges run by governments, pharmaceutical companies, insurers, and others.
Some things you should consider doing include:
- Join open source projects
- Numerous projects to collect and process health data are being conducted as free software; find one that raises your heartbeat and contribute. For instance, the most respected health care system in the country, VistA from the Department of Veterans Affairs, has new leadership in OSEHRA, which is trying to create a community of vendors and volunteers. You don’t need to understand the oddities of the MUMPS language on which VistA is based to contribute, although I believe some knowledge of the underlying database would be useful. But there are plenty of other projects too, such as the OpenMRS electronic record system and the projects that cooperate under the aegis of Open Health Tools.
New report ties together devices, data, records, and aspects of care.
Reformers in health care claim gigantic disruption on the horizon: devices that track our movements, new treatments through massive data crunching, fluid electronic records that reflect the patient’s status wherever she goes, and even the end of the doctor’s role. But predictions in the area of health IT are singularly detached from the realities of the technical environment that are supposed to make them happen.
To help technologists, clinicians, and the rest of us judge the state of health IT, I’ve released a report titled “The Information Technology Fix for Health: Barriers and Pathways to the Use of Information Technology for Better Health Care.” It offers an overview of each area of innovation to see what’s really happening and what we need to make it progress further and faster.
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.
Collecting actionable data is a challenge for today's data tools
One of the problems dragging down the US health care system is that nobody trusts one another. Most of us, as individuals, place faith in our personal health care providers, which may or may not be warranted. But on a larger scale we’re all suspicious of each other:
- Doctors don’t trust patients, who aren’t forthcoming with all the bad habits they indulge in and often fail to follow the most basic instructions, such as to take their medications.
- The payers–which include insurers, many government agencies, and increasingly the whole patient population as our deductibles and other out-of-pocket expenses ascend–don’t trust the doctors, who waste an estimated 20% or more of all health expenditures, including some thirty or more billion dollars of fraud each year.
- The public distrusts the pharmaceutical companies (although we still follow their advice on advertisements and ask our doctors for the latest pill) and is starting to distrust clinical researchers as we hear about conflicts of interest and difficulties replicating results.
- Nobody trusts the federal government, which pursues two (contradictory) goals of lowering health care costs and stimulating employment.
Yet everyone has beneficent goals and good ideas for improving health care. Doctors want to feel effective, patients want to stay well (even if that desire doesn’t always translate into action), the Department of Health and Human Services champions very lofty goals for data exchange and quality improvement, clinical researchers put their work above family and comfort, and even private insurance companies are trying moving to “fee for value” programs that ensure coordinated patient care.
Other industries can show health care the way
This article was written with Ellen M. Martin.
Most healthcare clinicians don’t often think about donating or sharing data. Yet, after hearing Stephen Friend of Sage Bionetworks talk about involving citizens and patients in the field of genetic research at StrataRx 2012, I was curious to learn more.
McKinsey points out the 300 billion dollars in potential savings from using open data in healthcare, while a recent IBM Institute of Business Value study showed the need for corporate data collaboration.
Also, during my own research for Big Data in Healthcare: Hype and Hope, the resounding request from all the participants I interviewed was to “find more data streams to analyze.”
Winners of the Blue Button Innovation Challenge
I think the main achievement of hackathons can be measured not by what apps are developed–reportedly, few are commercialized and maintained–but by people who find each other. The Blue Button Innovation Challenge brought together a lot of professionals who had never met before, and many formed teams that created really fun and useful apps that make you think, “Why hasn’t anyone done this yet?”