When I was looking for a place in Maine to go for care this summer, I went online to look at my options. I consulted hospital data from the government at HospitalCompare.HHS.gov and patient feedback data on Yelp, and then made a decision based upon proximity and those ratings. If I had been closer to where I live in Washington D.C., I would also have consulted friends, peers or neighbors for their recommendations of local medical establishments.
My brush with needing to find health care when I was far from home reminded me of the prism that collective intelligence can now provide for the treatment choices we make, if we have access to the Internet.
Patients today are sharing more of their health data and experiences online voluntarily, which in turn means that the Internet is shaping health care. There’s a growing phenomenon of “e-patients” and caregivers going online to find communities and information about illness and disability.
Aided by search engines and social media, newly empowered patients are discussing health conditions with others suffering from disease and sickness — and they’re taking that peer-to-peer health care knowledge into their doctors’ offices with them, frequently on mobile devices. E-patients are sharing their health data of their own volition because they have a serious health condition, want to get healthy, and are willing.
From the perspective of practicing physicians and hospitals, the trend of patients contributing to and consulting on online forums adds the potential for errors, fraud, or misunderstanding. And yet, I don’t think there’s any going back from a networked future of peer-to-peer health care, anymore than we can turn back the dial on networked politics or disaster response.
What’s needed in all three of these areas is better data that informs better data-driven decisions. Some of that data will come from industry, some from government, and some from citizens.
This fall, the Obama administration proposed a system for patients to report medical mistakes. The system would create a new “consumer reporting system for patient safety” that would enable patients to tell the federal government about unsafe practices or errors. This kind of review data, if validated by government, could be baked into the next generation of consumer “choice engines,” adding another layer for people, like me, searching for care online.
There are precedents for the collection and publishing of consumer data, including the Consumer Product Safety Commission’s public complaint database at SaferProducts.gov and the Consumer Financial Protection Bureau’s complaint database. Each met with initial resistance by industry but have successfully gone online without massive abuse or misuse, at least to date.
It will be interesting to see how medical associations, hospitals and doctors react. Given that such data could amount to government collecting data relevant to thousands of “Yelps for health care,” there’s both potential and reason for caution. Health care is a bit different than product safety or consumer finance, particularly with respect to how a patient experiences or understands his or her treatment or outcomes for a given injury or illness. For those that support or oppose this approach, there is an opportunity for public comment on proposed data collection at the Federal Register.
Update: In November, OMB Watch filed comments with the U.S. Agency for Healthcare Research and Quality supporting the proposal, arguing that a medical reporting system could make health care safer.
The authors of the comments advocate for sharing the data with researchers, regulators and the public.
“AHRQ should explore ways to provide public access to the data. Consumer reporting databases can be valuable tools for the public, as demonstrated by other agencies already experienced in them,” write Sean Moulton, director of federal information policy, and
Gavin R. Baker, federal information policy analyst at OMB Watch.
“The National Highway Traffic Safety Administration (NHTSA), the Consumer Product Safety Commission (CPSC), and the Consumer Financial Protection Bureau (CFPB) have made non-confidential extracts of consumer reports accessible online in order to help the public make informed decisions. Disclosing consumer-reported data allows other consumers and their advocates to identify trends, avoid harmful products and services, and address problematic patterns. AHRQ should examine the feasibility of publicly disclosing non- confidential information about individual reports, as well as aggregate data.”
The power of performance data
Combining patients review data with government-collected performance data could be quite powerful in helping to drive better decisions and adding more transparency to health care.
In the United Kingdom, officials are keen to find the right balance between open data, transparency and prosperity.
“David Cameron, the Prime Minister, has made open data a top priority because of the evidence that this public asset can transform outcomes and effectiveness, as well as accountability,” said Tim Kelsey, in an interview this year. He used to head up the United Kingdom’s transparency and open data efforts and now works at its National Health Service.
“There is a good evidence base to support this,” said Kelsey. “Probably the most famous example is how, in cardiac surgery, surgeons on both sides of the Atlantic have reduced the number of patient deaths through comparative analysis of their outcomes.”
More data collected by patients, advocates, governments and industry could help to shed light on the performance of more physicians and clinics engaged in other expensive and lifesaving surgeries and associated outcomes.
Should that be extrapolated across the medical industry, it’s a safe bet that some medical practices or physicians will use whatever tools or legislative influence they have to fight or discredit websites, services or data that puts them in a poor light. This might parallel the reception that BrightScope’s profiles of financial advisors have received in industry.
When I talked recently with Dr. Atul Gawande about health data and care givers, he said more transparency in these areas is crucial:
“As long as we are not willing to open up data to let people see what the results are, we will never actually learn. The experience of what happens in fields where the data is open is that it’s the practitioners themselves that use it.”
In that context, health data will be the backbone of the disruption in health care ahead. Part of that change will necessarily have to come from health care entrepreneurs and watchdogs connecting code to research. In the future, a move to open science and perhaps establish a health data commons could accelerate that change.
The ability of caregivers and patients alike to make better data-driven decisions is limited by access to data. To make a difference, that data will also need to be meaningful to both the patient and the clinician, said Dr. Gawande. He continued:
“[Health data] needs to be able to connect the abstract world of data to the physical world of what really happens, which means it has to be timely data. A six-month turnaround on data is not great. Part of what has made Wal-Mart powerful, for example, is they took retail operations from checking their inventory once a month to checking it once a week and then once a day and then in real-time, knowing exactly what’s on the shelves and what’s not. That equivalent is what we’ll have to arrive at if we’re to make our systems work. Timeliness, I think, is one of the under-recognized but fundamentally powerful aspects because we sometimes over prioritize the comprehensiveness of data and then it’s a year old, which doesn’t make it all that useful. Having data that tells you something that happened this week, that’s transformative.”
Health data, in other words, will need to be open, interoperable, timely, higher quality, baked into the services that people use, and put at the fingertips of caregivers, as US CTO Todd Park explains in the video below:
There is more that needs to be done than simply putting “how to live better” information online or into an app. To borrow a phrase from Robert Kirkpatrick, for data to change health care, we’ll need to apply the wisdom of the crowds, the power of algorithms and the intuition of experts to find meaning in health data and help patients and caregivers alike make better decisions.
That isn’t to say that health data, once published, can’t be removed or filtered. Witness the furor over the removal of a malpractice database from the Internet last year, along with its restoration.
But as more data about doctors, services, drugs, hospitals and insurance companies goes online, the ability of those institutions to control public perception of the institutions will shift, just as it has with government and media. Given flaws in devices or poor outcomes, patients deserve such access, accountability and insight.
Enabling better health-data-driven decisions to happen across the world will be far from easy. It is, however, a future worth building toward.