What to do About Health Care Data Sharing

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In my last blog I riffed on prospect theory and how it applies to health care data sharing. In essence, prospect theory suggests two categories:

1. People are extremely unwilling to accept risk when the consequences are unknown (patients avoid sharing data if they don’t know how it will benefit or harm them)

2. People are more willing to accept the risk when the reward is achievable, and the alternative is very harmful (patients with severe illnesses would readily share data when there is a possibility it could save their life or eliminate significant suffering)

Scenario 1, risk adversion, is more common across all constituents including providers, healthy patients and families, political leaders and philanthropists. Generally, the benefits of sharing health care data are foggy and unclear, while the alternatives to keeping the data private are not life threatening.

That said, despite the current ambiguity surrounding the benefits of data sharing among the general public, experts agree that increased data sharing would significantly improve our health outcomes. Based on feedback from readers, here are some thoughts on how different constituencies could tailor their approaches to increase health care data sharing, despite the perceived risk.

For providers: Establish a scenario that requires the C-suite to share data or else face losing economic funding. Perhaps the provider loses grants from the government and reimbursements are diverted to other providers who do share better if they do not meet compabitility standards. This would cause the organization to leverage the risk of losing income if the organization can’t effectively share information with others. It will encourage the C-suite to make data sharing a burning platform. It is vital to establish the trigger at the C-Suite, because tough organizational financial decisions are necessary to enable the transformational journeys towards increased collaboration.

For the patients and families with severe illness: Establish a scenario where the patients are provided with easy access and education towards chances to improve their health and patients with similar illnesses through sharing data openly or anonymously about their own health. This has succeeded in cases with neutral third parties such as Multiple Myeloma Research Foundation (MMRF), Michael J Fox Foundation, and CCFA (Crohn’s Colitis Foundation of America). These organizations collect health information from patients across the world to improve researchers’ abilities to discover new treatments and run clinical trials. The strong incentive in the financial rewards of helping the severe disease patients will trigger the organizations to encourage data sharing. Also, patient advocates and their families who experience positive outcomes thanks to data sharing should advocate and be on stage in key events at high impact platforms including data conferences such as HIMSS, AMIA, or BioITWorld.

For patients and families without severe illness: Establish a scenario where the patient transitions his or her thinking to a long term perspective, considering the potential for developing a severe illness rather than hiding behind their current healthy status. Use the education and experience around the care of others as a vehicle to engage them in the priority for lobbying for increased sharing/transparency from their service providers. Then, this group will reset to the severe illness group mindset. Since many people will eventually suffer and potentially die from a disease that may be positively impacted by fluid data sharing, we need triggers and tools that help warn and illuminate the future risks for healthy individuals that they and their family members may face later in life. Executing genomic testing, increasing education and engagement around the near term care of elderly family members, and inclusion in social support networks supporting severe illness can increase awareness of their own feelings of inclusion and support towards the position of the severe illness group.

For political leaders: Consider establishing a scenario where leaders challenge the public’s risk adversion to health data sharing without forcing expensive regulations. Maybe the health systems lose credentialing if they aren’t doing meaningful data sharing? Maybe patient payments amounts are tied to it? Perhaps reducing the risk considerations of a HIPAA breach for an institution by creating more ‘safe harbor’ conditions could help protect providers from unwarranted legal risk. It’s possible that a heavy fine for a first offense is the wrong approach to increasing privacy controls since it has a tendency to lock down all data. There needs to both be something real to lose by not sharing, but also something less to lose when mistakes are made, as to reduce the consequences for those that take the plunge of sharing data.

If the other players can’t fix the mix then deep pockets or new ideas might…

For private business: In this case, an entrepenuer or innovative existing company would establish a scenario that allows providers and patients to take advantage of a desirable zerio risk option. Data sharing fears are mostly misjudgments of risk. Maybe an insurance or financing model towards HIPAA risk and rewards can work. A dysfunctional system is one with a lot of opportunity for an enterprising organization willing to step in and cut the Gordian knot. Innovation and new leadership is always an option when a system isn’t providing the maximum value that it could.

For philanthropists: Establish a scenario where philanthropists create a free digital library of data while also helping individuals to self-educate about the health and the real risks, and lack of risks, with sharing data. I’m not sure who will step forward to focus their efforts, and pockets, in health data sharing. Using private fortunes to sponsor open digital libraries of health data is a real option for those considering funding specific narrow research projects. Failing narrow research projects quickly learn that a major limitation to their success is a lack of accessible and scalable data sharing. Small donations or microdonations can also contribute towards the cause of greater access to medical records for good purposes if large donors don’t step up. If people cannot give money, perhaps they can donate their medical information to philanthropies trying to build the data libraries. Or maybe they can be organized through challenges like the ALS ice bucket challenge where the outcome results in investment into new ways for data sharing and research for a specific disease.

Establishing different scenarios for providers, patients and families, political leaders, private businesses and philanthroptists just might tip the balance to more risk tolerant behavior in category 2 of the prospect theory, allowing for increased data sharing and ultimately better health outcomes.

The question now, is how do these scenarios or changes become real life and do so faster?

I haven’t done justice to this topic and apologize for a drive-by brainstorm of what could represent pivotal shifts needed to get us out of neutral gear in data sharing. Maybe a real economist can take it from here and build and test some models that release us from our cognitive biases. Or maybe anyone can look at this as a starting point for executing change at the heart of the issues.

Dan Housman is CTO of convergeHEALTH by Deloitte.

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2 replies »

  1. “1. People are extremely unwilling to accept risk when the consequences are unknown…”

    “2. People are more willing to accept the risk when the reward is achievable,….”

    On the internet, people will always choose convenience over security.

    “I encourage you to explore the scenario where patients are their own data silo and decide to share, or not…”

    Sounds great, but in practice may not work that well unless it is made so fool proof and easy the patient doesn’t need think about it or manage it, and it’s cheap.

  2. I encourage you to explore the scenario where patients are their own data silo and decide to share, or not, data with for-profit or non-profit organizations through their community, patients’ groups or foundations. And as an incentive to share with life science industry, to associate communities, patients’ groups or foundations with their members to the revenue of the monetization.
    This is what we are enabling with the Portable Genomics platform (www.portablegenomics.com)