Today’s kickoff of the National eHealth Collaboratives Consumer Consortium on eHealth convened the most diverse workgroup of over 70 stakeholders with various lenses on consumers and health, rarely seen at similar meetings, as Lygeia Ricciardi (@lygeia) of the Office of the National Coordiantor for Health IT (ONC) in the Department of Health and Human Services, observed.

However, although representing every conceivable segment of health consumer stakeholders, from seniors (AARP)  and physicians (MGMA) to people with disabilities (AAPD), women (National Partnership for Women and Families) and people who fall through the health safety net (the National Health IT Collaborative for the Underserved), there was concurrence about one key issue: that consumers overall don’t really know what health information technology is and what value HIT can have in their lives.

Today’s meeting launched some big ideas about the agenda for the Consumer Consortium, with perspectives shared by Ricciardi of ONC, Ruth Perot of the National Health IT Collaborative for the Underserved, Rob Tenant representing the physician view with the Medical Group Management Association, and Alice Brown talking about the women/families perspective with the National Partnership for Women and Families. Kate Berry, who leads the National eHealth Collaborative, bookended the session introducing the agenda and summing up the morning’s discussion and next steps.

Some of the most interesting sound bytes of the morning were tweeted, using the hashtag #NEHC. Among my own notes, the following were some big and important ideas that paint an important picture of the emerging health IT-engaged (or dis-engaged) consumer:

  • Ruth Perot reminded the group that by 2050, most U.S. residents will be people of color. This demographic phenomenon is already reality in California, Florida, Hawaii, New Mexico and Texas. Cultural diversity requires different messaging when it comes to health and behavior change, which includes embracing health information. Perot got real (which resonated with me) when she talked about the legacy of the Tuskegee Experiment, which to this day compels some African-American health citizens not to engage with the health system due to lack of trust. Trust is a precursor to health engagement.
  • Rob Tennant, the voice of the physician, talked about workflow in a physician practice–that more data does not mean better decisions. Patients who bring reams of health searches into the exam room during an office visit aren’t necessary better informed for the 12-15 minute encounter. Health IT vendors, software and app developers need to be mindful that patient engagement is first and foremost linked to their personal physician — still the most trusted health stakeholder in the patient’s life.
  • Alice Brown of NPWF reminded us that getting people to engage in health is heavy lifting: 10% of people will engage as a personal practice; 10% of people won’t ever engage; and the biggest population under the bell curve, 80%, need to be nudged in some way — sometimes financially, sometimes psychologically, oftentimes requiring a constellation of multiple, artfully designed ‘nudges.’ Health literacy, and health system/health plan literacy, continue to challenge health engagement.
  • Lygeia Ricciardi of ONC is all about #opengov and collaboration, making ONC an accessible Federal department. A representative from the AARP asked if she could co-brand health information coming out of ONC with her organization’s imprimatur, to which Lygeia replied, “Go for it!” — repurpose, re-use, reinvent for the organization’s audience. It is not a surprise, then, that Lygeia will co-lead a working group on messaging to consumers about the value of health IT.

More tweets generated during the NEHC meeting can be found on Twitter by searching #NEHC.

Health Populi’s Hot Points:  Kate Berry and the team at NeHC, supported by a steering committee of 13 representatives from both the public and private sector, did a wonderful job in assembling this meeting and making a lot of progress in 2.5 hours with a tightly-managed agenda focused on getting to the next steps: specifically, having attendees and interested others join work groups in the areas of:

  • Develop messaging strategies
  • Segment consumers
  • Identify and address disparities
  • Develop roster of best practices
  • Draft outreach strategies.

NeHC will launch an online community so that information can be disseminated and ongoing work groups can share progress. If you are interested in collaborating with this effort, please contact the NeHC. “Collaborative” is in their name, and that’s the ethos of this project.