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.