PCHIT Personas: Vulnerable Population

In many, if not all, of the sites we visited, the question of disparate access to PCHIT was raised. The same question has been raised with regard to EHR’s as well. In its report, the Expert Consensus Panel (see Electronic Health Records Still Not Routine Part of Medial Practice, Robert Wood Johnson Foundation, 3:27):

(The Expert Consensus Panel) has identified racial and ethnic minority patients and low-income or publicly insured patients as the two highest priority patient populations

The PCHIT Initiative broadens this view of vulnerable populations to include those with documented disparities including but not limited to individuals who are lesbian, gay, bisexual, and transgender. An additional vulnerable population of interest are returning soldiers (see: Longitudinal Assessment of Mental Health Problems Among Active and Reserve Component Soldiers Returning From the Iraq War).

Available data about Internet access contradicts conventional wisdom

Charts: Click on any to see full size (Sources: Benchmarking Digital Inclusion, ITIF, and Estabrook L, Witt E, Rainie L. Information Searches that solve problems. Washington, DC: Pew Internet & American Life Project; 2007)

In a review of the literature related to Internet use among vulnerable populations, we discovered that commonly held beliefs about use and access are not true. Even at the lowest educational and income levels, Internet use approaches 60 %, where it was only 10-30 % in 2001.

The following studies shed additional light on this issue:

A more sensitive indicator of patient access to electronic health records is likely to be online banking (see this post on that topic), because online banking requires confidence and convenience as well as access to be successful.

Income And Online Banking 2007.003Online banking use and income level, from Online Shopping, Pew Internet & American Life Project, 2008

East Boston NHC, Administrative Building

East Boston Community

Patient-centered HIT applications do not necessarily require use of a computer on the consumer’s end. For example, a mobile phone may be the most effective vehicle for certain populations, whether the information coming to them is in the form of an automated phone call (which can be delivered in multiple languages), a text message (such as for medication reminders), or a more sophisticated combination of audio, graphics and video. A variety of strategies are profiled in a recent report published by the Georgetown Health Policy Institute’s Center for Children and Families (see Health Information Technology: Innovative Applications for Medicaid).

Outside of patient access to computers or the Internet, there are opportunities

Some analysts shortchange vulnerable populations by suggesting that language barriers, the digital divide, or health literacy pose insurmountable obstacles to effective PHR adoption. Perhaps no population faces a greater panoply of barriers–including Spanish as primary language, health literacy, access to computers and the Internet, geographic challenges, and a lack of care continuity–than migrant farm workers. The tool, MiVia, has demonstrated that PHRs can be effective tools when appropriate accommodations are made, such as using community health workers to help facilitate PHR adoption.

As we consider patient-centered health information technology, the definition should be broadened beyond personal health records, to any technology that provides the benefits and impacts of patient access. These impacts accrue whenever the health system is accountable to those it serves, by providing them the information they generate about them, whether in paper, computer or smart card form.

Unresolved issues

  • It is unclear how pervasive the conventional wisdom of the “digital divide” is, and if there are related factors that would bias toward inaction even if the data were better understood for populations studied (ethnicity, income, education)
  • For populations that are less well studied (e.g. lesbian, gay, bisexual, transgender, returning soldiers), the impact of provision of access to PCHIT in safety net environments is also unknown. With limited funding available to study sexual minority populations, for example, disparities may only be exacerbated in an environment of HIT without PCHIT.

Countermeasures

In 2008, we are emphasizing safety net providers and vulnerable populations in PCHIT work. We are providing the technical assistance of a knowledgeable medical informaticist and patient empowerment advocate to demonstrate the impact of PCHIT in a vulnerable population. We would also like to spend some effort in packaging this data and presenting it in leadership forums. Ted Eytan did this recently for the District of Columbia Primary Care Association, where it was well received (see Presentation to DCPCA, December 18, 2007), as well as on a recent event at Urban Health Plan, in Bronx, New York (see: “We did it! Thanks Affinity Health Plan and Urban Health Plan!“)

Unite HERE!

Ways to Engage

In addition to working with health care and IT leadership on promoting PCHIT as part of HIT, it would be valuable to engage with patients themselves. In 2008, we are hoping to shadow a patient who is part of a vulnerable population as they manage chronic disease. This will most likely happen on our trip to Sonoma, California, in March, 2008.

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