From Superstars to Jane and Joe–Engaging Consumers in Health IT

Note: This is a guest post from fellow innovative Washingtonian and health communications professional Lygeia Ricciardi ( @lygeia ). I’ve had the pleasure of collaborating with her for some time through the Clinovations collaborative here in DC, and we share a lot of the same interest and passion around putting consumers/patients/citizens at the epicenter of health care.

If you care about health IT, you’ve probably heard of “ePatient” Dave DeBronkart ( @epatientdave ) and Regina Holliday ( @reginaholliday ). Both have risen to relative stardom telling their personal stories of how poor policies and technologies dangerously block the delivery of good quality healthcare. They have helped articulate what’s wrong with the system and steps we can take to fix it—infusing “business as usual” with the spark of personal passion through major media outlets and government hearings.

But the “patient perspective” is too often absent from important discussions. As we prepare to spend billions of dollars rolling out health IT through the HITECH funds in the Stimulus Package, we need a whole army of Daves and Reginas. Too bad they are so hard to find… or are they?

As Dave has pointed out, “we are all patients.” Indeed. Scratch the surface of almost any life in the US (including yours?) and you’ll find stories of how health and healthcare could be better with the right information and tools. There are thousands of other Jane and Joe consumers who can help shape the future of health–if we can tap their input appropriately.

Different Kinds of Engagement Are Needed

The need for consumer input is not unique to health IT, but it’s an area that has strong potential to reshape healthcare more broadly in the near term. “Consumer engagement” is often used as a catchall phrase, but unpacking it reveals several different roles:

From Superstars to Jane and Joe

“Superstars” like Regina and Dave shock the system out of complacency. They get get broad media coverage and participate in high profile meetings, hearings, and conferences. Qualifications include an unusually compelling personal story, a flair for communicating (whether through words, paint, or Seinfeld clips), and the motivation to undertake a personal crusade for change.

Equally important are the “Implementors” who weigh in on the sometimes bewilderingly complex details of developing tools, networks, and the policies that govern them. A great example of an Implementor is Dan Teitz, an HIV/AIDS expert who has tirelessly shaped statewide health IT policies and outreach materials in New York—and encouraged a broad network of other consumers to do the same. Implementors like Dan are invaluable in the governance of hospital networks, regional, and statewide HIE networks, as well as in reviewing products and policies for PHR, EHR, and online health service developers.

The broad base of the consumer engagement pyramid is the general public—“Jane and Joe Consumer.” The ultimate goal is to engage them (us!) better in personal health and healthcare through information and communication. Engagement of the general public is essential, and we haven’t yet figured out how to do it effectively.

(To wit, only 7% of Americans have a personal health record.)

Roadblocks Consumer Superstars and Implementors Face

Broad public engagement is the topic of another post (or several)–for now let’s focus on Superstars and Implementors—both of which pave the way for Jane and Joe. So why aren’t there more people like Dave, Regina, and Dan? Time, money, and specialized knowledge.

Other health IT stakeholder groups, (eg providers, payers, and IT companies) have financial incentives to pay lobbyists and other staff to advocate for them. They stand to gain major government funding or profits from health IT implementations that go their way.  But who pays consumers? In many cases, no one. It’s that familiar healthcare problem of misaligned incentives.

Sure, consumer organizations (such as the Consumer Partnership for eHealth) have begun to get some traction when it comes to shifting major debates such as the implementation of “meaningful use,” but in general consumer groups report that they are under-funded and unable to dedicate the time and other resources necessary to track and participate substantively in health IT debates and implementation.

Part of the problem is that the rest of the healthcare establishment isn’t yet used to inviting consumer participation. Those who do seek consumer input for conferences or testimonies in Washington often don’t want anyone “too professional.” They seek a fresh story—some as yet “undiscovered” patient who can capture media attention anew. But is that really necessary for an Implementor, and how many consumers will make the effort and foot the bill to tell their stories, particularly if they will  enjoy only a limited shelf life?

Potential Solutions

The first step is for all health IT stakeholders to understand that consumer engagement is essential on several levels. Next, consumer organizations and foundations should better coordinate and leverage their resources to support consumer “Superstars” and “Implementors” in the following ways:

Funding — Fund travel expenses and provide basic stipends for the time consumers put into shaping the health IT landscape.

Knowledge – Develop and disseminate basic materials about health IT, not for the general public, but explicitly for those who want to participate more in depth.

Networks – Develop networks to support consumers engaged consumers, who may benefit from each other’s experience, especially as Implementors.


Lygeia, this is an excellent post – resonates here – I've been wondering, where do we find more patient voices? I still want a Patient Speakers Bureau, as first proposed over a year ago, and that's an extra layer of work – it should become de rigeur for any credible conference to have a good solid patient speaker.

I don't have time to fully absorb this post now but I sure want to. Nag me if I'm not back in a couple of days. Well done.

(And, world, I should note that Lygeia's the one who first brought me to Washington, after the "Health 2.0 meets Ix" conference in April 2009. Thanks!)

Such a great post, I connected it my post about Judith Hibbard, a researcher at the U. of Oregon well known for consumer engagement work!

Perhaps an initial way of getting patient voices in the board room is for them to arrive, arm in arm, with a clinical champion "insider". Many can qualify for that role, and we would relish relinquishing the stage.

Dave, Lodewijk, and Sue —

Thanks for your thoughts. I know you've struggled with this challenge, Dave–and I'll look forward to discussing it with you.

Lodewijk please keep me updated on GHITA–I think there's a lot of potential benefit in international learning in this area.

And Sue, I agree with you. A tie to a clinical champion is a good way to bring patients in. ePatient Dave himself and the admirable Dr Danny Sands are a good example of such a relationship.

– Lygeia

Nice post, Lygeia. Your idea of "Implementors" is wonderfully expressed.

There is no question that consumer health advocates of all shapes and sizes need better access to platforms across the spectrum of health. Yet, I can't help but note that in just a few short years, the seedlings of patient experience have become embedded into many old line medical models: Mayo, Cleveland Clinic, Harvard. This is encouraging.

In certain segments, including pharma and HIT, while sometimes we see a company's marketing team providing lip service to patient experience, more often than not I sense companies sincerely wrestling with the idea of how to engage with or collaborate with the "emancipated patient". This too is encouraging.

Your post offers some practical possible solutions to get started, not the least of which is FUNDING.

Hi Christine —

Thanks for your comment. I agree that there are a number of encouraging signs that show a growing level of patient engagement. Fortunately, technology itself can help solve the problem by helping patients engage via email, online communities, etc. But they (we) still need some additional support…

Ted Eytan, MD