While the vast majority of people find value in electronic health records (EHRs) — both those whose doctors currently use them and those patients whose personal health information still resides in paper-based systems — most remain concerned about their patient rights, privacy and security of that data. 

Making IT Meaningful: How Consumers Value and Trust Health IT, a report based on a survey from the National Partnership for Women & Families (NPWF) published in February 2012, weaves the story of an American public, keen to have their PHI digitized, but deeply concerned about their rights to access and protect that information.

I covered the consumer value perspective with respect to EHRs in Health Populi on February 16. This post covers the privacy and security portion of NPWF’s poll.

People who currently access EHRs see greater value in them for themselves as patients and for their providers. Online access directly correlates to increased trust. 80% of people who have access to digital health data use the systems. 

Consumers accessing EHRs value that:
– They can correct incorrect or incomplete information in the record; 
– The EHRs positively influence their personal health literacy, helping them better understand their health conditions; and,
– EHRs bolster their medication compliance.

However, there remains a gap in peoples’ perceptions of how safe their health information is with respect to the data being lost or stolen. Nor are people feeling particularly secure in health data protection laws, with HIPAA’s impact not seen as trustworthy. NPWF asserts that HIPAA privacy notices have not been efficient or effective in informing people of their health data privacy rights. This trust-gap exists for people whether covered by an EHR or in a paper-based system.

Physicians are seen as much more trustworthy as health data stewards than are governments or institutions. 

The conundrum is that people welcome the advent of EHRs — but remain concerned about their privacy, security and access rights.

In addition to direct-care (primary use) data breaches by providers and health systems, people are concerned about secondary data use: how their PHI gets used in research and marketing, for example. 

Still, most people, whether their physicians use EHRs or not, see EHRs as being more effective in delivering a “privacy promise” for their PHI. The survey’s data points on this issue included giving patients confidence that their data was safe, complying with privacy laws, giving patients more control, seeing an access record, and earning trust in the way information is handled. In these instances, the EHR was seen as delivering greater privacy protections than paper-based records.

The survey polled 1,961 U.S. adults, both those whose doctors used EHRs and those using paper-based records systems. The survey oversampled Hispanic adults to have a statistically rigorous sample on which to learn more about their privacy perspectives.

Health Populi’s Hot Points: Trust and authenticity are far-and-away the two key drivers for patient engagement when people choose the organizations with which they will health-engage. The first Edelman Health Barometer, launched in 2008, discovered this phenomenon.

Where is trust in the U.S. health system? Trust resides first and foremost with patients’ doctors, followed by nurses and pharmacists. And don’t underestimate the power of social networks in health, offline and online. Patients trust patients like them, and patients trust their families and friends. To make the case, the health information industry can leverage the power of Health Connecteds who currently access PHRs/EHRs and can evangelize the merits of EHRs. 

Trust breeds trust in a virtuous cycle: the NPWF’s hypothesis is that respondents’ views on EHRs were shaped by their levels of trust in their provider to protect their privacy, along with the value they’ve experienced in their record system.

As we enter this week of the annual meeting of the Health Information Management & Systems Society (HIMSS), I will be asking every supplier with whom I’m meeting what their patient engagement strategy is. Those who don’t have a response will be behind the curve in making the case for EHRs, health care quality, and trust.