Abstract

Keywords: Participatory medicine; patient engagement.
Citation: Author FM. The title of the article. J Participat Med. 2010 Sep 7; 2:e5.
Published: September 7, 2010.
Competing Interests: Dr. Smith works closely with Jessie Gruman, PhD, as the co-editor of JoPM. Dr. Gruman is the president of CFAH, the organization that issued this report.

As a reader of this journal, you do not need to be convinced that participation in your own health care is critical. But you may be interested in knowing just how “participatory” the American public is these days, especially given the many media messages, tools, and communication devices aimed at making it easier to care for one’s self and loved ones.

The “Snapshot of People’s Engagement in Their Health Care” (http://www.cfah.org/pdfs/CFAH_Snapshot_Abridged_2010.pdf) issued by the Center for Advancing Health (CFAH) provides an analysis of the actions people take (and don’t take) to benefit from the care available to them.

CFAH conducted a series of qualitative and quantitative studies to identify 42 behaviors that constitute participation. For example, these include choosing a doctor, asking questions of one’s provider, and discussing treatment options. They searched 31 national population surveys for questions that were relevant to those behaviors and assembled the data in an easy-to-read report that is packed full of useful information.

Here are the key findings: The review of surveys conducted 2001-2009 found that for the majority of engagement behaviors for which survey data were available:

• One-third of American adults perform them consistently
• About one-third of people perform them inconsistently or tentatively
• One-third do not perform them at all

This is a rough approximation because even within a set of behaviors, individuals’ performance of specific actions may vary significantly. Because data came from 31 surveys, it is impossible to analyze the extent to which people behave consistently across different behaviors.

When data were examined within and across the behavior sets, some patterns emerged:

• People appear to be more likely to perform simpler tasks (e.g., make a list of medications) than complex actions, (e.g., make informed treatment decisions).
• The depth of participation in any engagement behavior set tends to be shallow. For example, more people seek out information about a provider or health plan than actually use that information to make a choice.
• People appear to defer information and advice-seeking until they have a specific need: their participation takes place “just in time.”
• For any single behavior, those less likely to participate are those with little education, marginal health literacy, low incomes, multiple chronic conditions and lack of health insurance.
• While such barriers affect a sizable a number of people, lack of participation is also common among those who face none of them.

This report is sobering for patients, health professionals, researchers and policymakers – there is so much to be done! It is also a very useful document and attachments: Advocates for participatory medicine seeking to describe the size and scope of the challenge of its adoption can find good solid facts with which to make their case. Patient-centered care activists can work to ensure that care delivery supports the ability of patients and families to perform the specific behaviors identified in the report. Researchers interested in tracking participatory medicine can find a repository of the relevant survey questions available. Quality improvement experts can use the definition of engagement behaviors as the basis of meaningful measures and the prevalence of those behaviors to help set priorities among them.