Consumer Engagement 2.0: the Next Generation
The most recent edition of Health Affairs is chock full of articles about e-health, which is not surprising, given the amount of attention it is getting everywhere, thanks to the ARRA -- American Reinvestment and Recovery Act -- appropriation of $19 billion for health information technology.
One of the articles of particular interest to me -- and not just because Health Care For All is mentioned, and I am acknowledged! -- is by MAeHC (Mass eHealth Collaborative) CEO Micky Tripathi and the directors of the three communities of the Blue Cross Blue Shield pilot projects, David Delano (North Adams), Barbara Lund (Newburyport), and Lynda Rudolph (Brockton). Engaging Patients For Health Information Exchange (abstract) deals in large part with a crucial and challenging topic: trust. When patients feel confident that their personal health information (PHI), is private and secure and that they know and can control who will be seeing it and using it, it seems likely that more accurate and more complete information will be available to be shared among providers, leading to better outcomes. A phenomenon called "privacy protective behavior," which describes seeking healthcare outside one's network and paying out of pocket to ensure that treatment is kept "off the record," has worrisome health implications, but points to fears that some patients have about the lack of privacy and security of their health information.
The MAeHC has been thoughtful about these issues and worked hard to include the consumer voice in these conversations. The results of its efforts are impressive: community consumer councils, patient opt-in, audit trail availability, and planned patient portals in two of the three communities. But the challenges of broad-based and proactive patient engagement are not easily solved, a deeper dive around patient opt-in and audit trails reveals great complexity and limitations, and patient portals will not answer all questions, will not be accessible to or used by everyone, are not yet in existence, and finally are not yet planned for all three communities.
Understandably, the need to succeed puts pressure on health information exchanges to sell the idea to patients; without information, the health information exchange becomes meaningless. I would argue however that the balancing act between educating and marketing should always be weighted toward the former, given that consumers of healthcare are not as free to make choices as consumers of other goods and services because of all sorts of financial limitations and psychological vulnerabilities. Two additional consumer safeguards would be helpful. First, since signing an opt-in form at the point of care is not always the best gauge of understanding and meaningful consent, other approaches around patient consent need to be considered. Second, transparency around the flow of one's personal health information should not be limited to knowing which clinicians have accessed it, but should also include those who are using it for other purposes, from research to marketing.
The efforts of the MAeHC to engage and include the consumer voice have generated great interest around the country, which can only serve to advance the needs of consumers nationwide. The work evolves and continues; the next important step, evaluation, should include, among other measures, quality parameters from the patient's perspective. Although the issues around sustainability of these projects are many and complex, the need for trust -- from patients and providers alike -- is paramount. As Tripathi et al. say in their conclusion, " . . . it is all too easy to underestimate the importance of trust, until it disappears." We will not -- we must not -- let that happen.