A few months ago, in this publication, I discussed the results from an ONC survey1 that indicated a low level of on-line consumer engagement with their providers and others in the health space. My opinion at the time was that the survey showed that much of the “engaged consumer” hype was driven by the “echo chamber” and not the consumers themselves. However, there have been several recent developments that I think are worth mentioning.
- The increased focus by both the White House and Congress on dealing with the so-called “surprise billing” problem is creating new opportunities for consumer involvement. Surprise billing is where a patient gets an unexpected bill, often large, because they obtained a service from an out-of-network provider not covered by their health plan. Part of the “fix” for the billing issue is to help increase transparency and promote awareness for patients as they try to navigate the rocky shoals of the US healthcare ecosystem. This promotion of more transparency once again brings us to the promised land of the “engaged consumer”, that mystical hero, waiting in the wings, who is going to bend the cost curve and create a much less dysfunctional healthcare system through their increased engagement in the ecosystem. One bill (S1895), introduced recently in the Senate HELP Committee, has a Section 5012 that requires health plans to make available for ”access, exchange, and use without special effort, through application programming interfaces (or successor technology or standards),” claims, encounter, and payment data for up to 5 years even if the individual no longer is a member of the plan. While this legislation – in and of itself – will not change the game, combining it with similar actions that CMS has attempted to require through regulation for the Medicare Advantage plans, does represent a significant shift. Of course, the devil is always in the details of how such a requirement will be implemented, publicized, and enforced.
- Another interesting development was the recent Journal of American Medical Association (JAMA) article describing a recent survey that they had done across 12 US health systems “with at least 9 months experience allowing patients to download their electronic health information” through FHIR-enabled APIs. The results were disappointing. Over the period of the survey, the rate of unique new users was small and flat. The average number of portal users who were also users of the API was less than 1%.
The healthcare consumer challenge is a bit of chicken and egg. Without an infrastructure in place that will develop useful and easy-to-use applications to support consumer engagement, there will be little incentive for consumers to engage. On the other hand, without a large consumer population interested in getting and using their health care information, developers will quickly turn their attention to areas with a greater and more immediate payoff. I do applaud the government for beginning to promote a more active consumer/patient infrastructure. However, it is still difficult for most consumers to understand how to both use and take advantage of more readily available health data using 3rd party applications. Here are a couple of suggestions:
- As I’ve said before, much more needs to be done by the government, insurance plans, healthcare providers, and consumer groups to educate the consumer/patient/member, especially seniors, those with chronic conditions, and family caregivers who will benefit the most from actively engaging with a more transparent, interoperable healthcare system. I looked at a number of these organizations’ websites and could find little or no information related to APIs and 3rd party applications, unless it is buried in some obscure section of their website or portal.
- The government needs to continue to push the industry towards the widespread use of the FHIR standard and the use of open APIs. The government should also push industry to make their API endpoints more readily accessible, perhaps even creating a centralized directory of endpoints.
- There needs to be a concentrated effort to get feedback from the public on what they want with healthcare data, tools, and other related areas. Much of the buzz seems to be a bit self-serving, driven by vendors and political officials, but an engaged consumer population could really help change how healthcare is delivered, data is accessed, and drive future needs.
The hype around the “engaged healthcare consumer” will continue in the coming years. The infrastructure to support the healthcare consumer will become more ubiquitous as Apple and other vendors strive to mine the potential data goldmine that they feel healthcare consumers can bring. However, without a stronger focus on specific groups of consumers who will benefit the most, the results may not realize the potential of the engaged consumer movement. Innovation without the right purpose will not achieve much more than stagnation and could make the healthcare system worse because it could result in even more uneven care management practices.