RWJF Senior Program Officer, Susan Mende, BSN, shares the foundation's insights on the strengths and areas for growth in data sharing and transparency programs.
Legislation spurring healthcare transparency continues to pop up everywhere, including several state bills from Oklahoma and Idaho. The proposed bills would mandate collection of pricing information to be posted online and updated at least once a year. If signed into law, the states would join the ranks of those who already have price transparency legislation in place.
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Price transparency, however, is not the only type of transparency trending in healthcare settings. Transparency concerning quality and improvement is also becoming more of a common fixture in hospitals and health systems.
With all the uncertainty surrounding data-sharing and data transparency, one thing is for certain: Data sharing is not a stand-alone solution. There is still plenty of work to be done to determine which data is most useful when shared, who gets the most out of data transparency and what happens when data is actually released to the public.
The Robert Wood Johnson Foundation has made some gains in this regard. Its Aligning Forces for Quality initiative is exploring the effectiveness of data transparency and data sharing through a 10-year program grounded in 16 communities across the country. AF4Q is working to create new ways of improving healthcare quality through data sharing, allowing community-based multi-stakeholder groups to come to consensus on the areas to be addressed.
Aligning Forces for Quality's hospital success
Susan Mende, a senior program officer at the Robert Wood Johnson Foundation, says one of the more successful examples of this community-based data sharing has been as a result of the work by Better Health Greater Cleveland, which leads the AF4Q alliance in Cleveland.
One health system in Cleveland, MetroHealth System, was particularly behind on pneumonia vaccinations for diabetes patients, with only a 27 percent completion rate for the procedure. To improve, MetroHealth looked internally at its data to develop interventions. The system was so successful it was able to increase pneumonia vaccinations for diabetes patients to 70 percent in the first year of the intervention and, after two years, to a stable 90 percent.
Noting the success of MetroHealth in the first year of its vaccination intervention, Better Health Cleveland asked the system to share best practices for other hospitals in the region to help them similarly increase their rates of pneumonia vaccination for diabetes patients. MetroHealth agreed and presented three key interventions from its program at a community-wide meeting for other practices' benefit.
The sharing was a radical success. "What's very exciting is after the sharing of the protocols, [pneumonia vaccinations in diabetes patients] in other health systems went from 70 percent to 82 percent in three years. The knowledge MetroHealth and Better Health Cleveland gained didn't just stay in one pocket. Peer-to-peer learning is very useful because providers, [many of which face the same challenges], learn from 'a practice like me,'" says Ms. Mende.
What do consumers do with data?
AF4Q's mission may focus on providers, but RWJF has also done a lot of work making data consumer-friendly for areas in which consumers have interest, such as price. Despite the hype surrounding consumer-accessible data, however, it looks like it may take more than accessible data to satisfy consumer demand for transparency. As it turns out, while consumers may think they want transparent data, such as price data, they don't seem to know what to do with it when it's available.
"What we have found at this point in our expertise in transparency and in using data to measure performance: We get more bang for [our] buck on the provider side. We have less traction with putting data in the hands of consumers," she says of improvements from data sharing.
This could be for many reasons, she says. Data transparency is relatively new. What used to be a black box is now being opened, but consumers may not yet have the background knowledge or context to understand and engage in the data. In fact, Ms. Mende notes that engaging consumers in their care appears to be much more effective for health improvements than simply handing consumers formatted health data.
Meeting halfway
At any rate, the limits of the potential gains from leveraging data aren't yet clear. At the moment, it seems data analysis could be beneficial across the board. Ms. Mende says data-sharing is as important as performance measures and public reporting. But she points to her observation that data can only go so far to improve quality: "You can't be doing all this and forget about the patient. Consumer engagement is critical to get to real quality improvement."
So for hospitals and health systems trying to leverage data transparency, the key may be in simultaneously securing consumer engagement. To do this, all providers who engage in data-sharing will have to figure out how to tackle another major hurdle: timeliness. When accounting for data collection, data analysis and data translation to consumer-friendly materials, the lag may be significant. How this obstacle can be overcome isn't one for which providers have developed useful insights, at least not yet.
Consumers, however, may still meet hospitals half way, according to Ms. Mende. As healthcare costs change for consumers, and as more information is available, consumers may realize they have more skin in the game. Consumer action as a result of shared data will continue to grow. All of this will take education and time, but it's not an out-of-the-question scenario, and it's one hospitals can plan for — and maybe even facilitate — if they want to get ahead of the game.
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