Consumer Access to Health Care Data: Still a Challenge

Noam H. Arzt, Ph.D.Consumers continue to be frustrated with lack of access to their healthcare data, even as wearables and other consumer-targeted devices and services continue to sprout. Recently, ONC launched a Consumer Health Data Aggregator Challenge to spur the development of new applications and partnerships to provide aggregated health data to patients. While the financial “prize” for this effort is meager, recognition by ONC might be the real brass ring. This challenge focuses on the use of FHIR exclusively to support interoperability between systems and present data to consumers. I suspect that applicants will have some trouble meeting the requirements of the challenge effectively, and this is indicative of the broader challenge in supporting this type of data access.

Issues include:

• There are significant data quality issues with interoperable health data. Even if you receive data in an acceptable format the contents are often challenging at best to interpret correctly.
• “Data aggregation” means different things to different people. Is it good enough to just provide access to individual provider records through one site (meaning, each physician’s records for the patient intact and not co-mingled)? Do the records needs to be integrated domain by domain (meaning, all medications together across data sources, all immunizations together across data sources, etc.) and de-duplicated?
• EHR vendors continue to be focused on software improvements required to meet Meaningful Use requirements and are not willing to be distracted on such projects as these.
• FHIR continues to have limited penetration and deployment “in the field” even if products can support it “in the lab” (here’s a great article comparing CDA and FHIR).
• It is very tough to prove there is a market for these applications, regardless of a clear recognition of the problem. Patients do not understand the complexities involved here – data, systems, law and policy – so often revenue projections based on retail subscription models in particular are suspect. Strategies that targeted arrangements with health systems rather than individual physician practices likely have more efficacy.

I’ll be curious to see what results from this challenge and how the market for these projects develops.