Addressing the (Sobering) Real-World Challenges of Consumer Access to Health Information

Alma Trotter published an important whitepaper this week that highlights the importance of CMS’ role as an operator in addition to health industry regulator on enabling patient digital access to their health information. As a passionate supporter of the CARIN Alliance (whose mantra for consumers is “access to more data, with less friction”), I’ve celebrated Ciitizen’s Patient Record Scorecard and in that spirit, found this piece of investigative journalism quite helpful.

Following CareSet’s 2014 Freedom of Information Act request seeking access to provider digital contact information, a court approved the release of a fraction of the provider self-entered contact “domain names” (ie., not the full email addresses) which enabled the CareSet team to review how providers message the process for patients to request their health information. Sadly, of the 50,000 providers identified, approximately 18% of the sample failed to describe any digital methods for patient access to their health information despite a decade of EHR incentive payments (mentioning mail or fax-based methods instead).

In addition to thanking the CareSet team for providing more real-world evidence of the challenges in enabling patient access to their health records, I thought to point out at least three ways in which we might build upon this research: the need for greater accountability in enabling patient digital access to their health information; the need to improve the accuracy of provider directory information at the lowest possible physician burden, and the importance of addressing the digital divide as we close access gaps to patient digital health information.

Accountability in enabling patient digital access

On accountability, CMS has put greater pressure on physician reporting of missing digital contact information by announcing its intention to publish a “naughty list” of sorts but will defer until it adds a “bulk” upload feature for organizations to publish across a number of providers (as described in this FAQ). However, this requirement presumes providers will put pressure on their respective health IT vendors who might otherwise store that information. For example, since 2011, with the launch of the Direct Project, the industry has standardized on “secure email” addresses for the vast majority of providers, but for reasons that are hard to justify today, the health IT platforms administering these email addresses keep them hidden from the public. CMS should strongly encourage them to publish these addresses on behalf of providers who may not even know their own address.

Accuracy of provider directory information

On improving directory accuracy, I continue to focus on designating physician websites as a trusted, accurate source of information on clinic addresses, phone numbers, and other basic items that the OIG has pointed out remain inaccurate on the NPPES or PECOS data systems. CMS should consider allowing physicians a burden reduction incentive for publishing their website URLs in NPPES. Rather than requiring providers to “update the system within 30 days of a change,” CMS could offer to take on that burden by periodically checking those websites for updates in a manner used by Google, Bing, or other internet mapping services.

Addressing the digital divide

Finally, following the Biden’s administration sobering but incredibly important report on advancing racial equity and support for underserved communities, it is clear that not only is the digital divide all the more important to close amidst the pandemic, but that the very programs administered by government agencies, such as the expanded broadband benefit, are often administratively burdensome for some families to access. CMS should extend its API used to allow third-party web brokers to calculate tax subsidies for health plan shoppers, to provider designated apps seeking to help patients access and use other government benefits that often need the same validated information – income, citizenship status, and the like. In many ways, it would advance the Obama Administration’s vision for standardizing “consumer-mediated” data sharing for eligibility and enrollment systems, as endorsed by then HHS Secretary Sebelius.

All hands on deck

We must continue to expand the tent towards an “all hands on deck” approach to improve consumer access to health information. We need more investigative data journalism by the CareSet team and others; we need more public/private collaboration on technical standards to lower frictions and improve data liquidity; and we need a more agile regulatory state that adjusts as needed based on real-world evidence of what works and what doesn’t.