This interview with Chris Gibbons is the fifth in a series of brief chats between CFAH president and founder, Jessie Gruman, and health care experts—among them our CFAH Board of Trustees—who have devoted their careers to helping people find good health care and make the most of it

Chris Gibbons, MD, MPH (CFAH board chair), is the associate director of the Johns Hopkins Urban Health Institute and the director of the Johns Hopkins Center for Community Health. His interests focus on demonstrating the value of uniting information and communications technologies with culturally appropriate clinical and behavioral interventions to improve health outcomes and reduce disparities in chronic disease among African-American populations.

HIT and Patient Engagement

Gruman: You work on a variety of projects related to health behavior at the Johns Hopkins Center for Community Health, which you direct.  Can you describe how this work is related to the growing need for people to participate actively in their health care?

Chris Gibbons:  Most of my work within the Center these days is focused on whether and how individuals – sick or well – use technology for health-related purposes.

I think that if people are ever going to be able to use technology to engage in their care, the technologies have to be built for them and have to be usable by them. This admittedly sounds like a no-brainer.  But unfortunately, most of the tools and applications developed within the HC sector were designed without any participation or particular concern about how non-professionals would use them.

Gruman:  It’s hard to believe this is still true, what with all the attention to end-users.

Chris Gibbons:  You’d be surprised. This is true even of things that have great utlility for doctors and nurses like Electronic Health Records (EHRs).  Part of the purpose of an EHR is to transport data around from office to office; part is to track clinician, clinic and hospital performance and part is to be able to aggregate data for research purposes.  But an important function that EHRs serve is to be able to support a clinician in his or her office and to enable patients to participate in their care via information they get through a patient portal.

You need to develop those tools with clinicians and patients involved in the process and with their use of them in mind.

Gruman:  And this is not happening?

Chris Gibbons:  AHRQ recently released a report –  Electronic Health Record Usability: Vendor Practices and Perspectives – that shows that this doesn’t often happen.  The study was aimed to better understand what the vendor reported they were doing around usability. In the world of technology development, this means the ability to use a technology safely, effectively and without error.  In order to get there, you have to involve end-users.  The report authors asked vendors if they involved patients as end-users and found that most vendors paid little attention to any end-users, much less patients.

When we finally get to the point when we are building health care interactions around EHRs – for scheduling, communication and so on – patients and caregivers simply have to be able to use them.  If they are not able to do so, a burden will fall disproportionately on those who differ from the assumptions of the developers about the characteristics and skills of patients as end-users.  They will therefore benefit less from their care.

The work we are doing shines light on this problem and pushes the government to look at usability much more so than they have done before as well as thinking about what they might be able to do to lessen the chance that EHRs (and other tools as well) might lead to unintended consequences that exacerbate disparities in care and outcomes.

Gruman: I know you also do some more applied work on this problem as well.

Chris Gibbons:  We are not sure that we (generally) have done as much as we can to understand the differences between people. Pew Internet and American Life project shows that people use technology in very different ways: older, younger; men, women; Whites, Blacks, Hispanics, Asians.  We don’t know enough about the commonalities across those groups to build things better.

We are trying to understand the differences and similarities that may have implications for the design, usability and the outcomes associated with the way different groups will use the different technologies.

Gruman:  What groups are you working with?

Chris Gibbons: As you know, there is a growing interest in the roles of family caregivers, paid caregivers, patient navigators and home health aides who often work in low income, marginalized, sometimes rural communities that don’t have the technology infrastructure of urban areas.

We are concerned that the people cared for by these individuals can’t benefit from new health technologies.  Maybe if navigators, community health workers could bring the technologies to people, maybe that will help.

After all, who says you have to have a computer in your home in order to benefit from them?  Maybe you only need three hours of computer access per week.  Some people may need a navigator to use the technology right or maybe they just need some coaching to get started.  It is clear that individuals are able to do more with technology than they do without.

Gruman: Awhile ago, you also published a review of the impact of consumer health informatics in which you concluded that while there was no evidence of harm, there was also no evidence of benefit, and you called for evidence-based standards that might turn this around.

Chris Gibbons:  There are no standards that have been adopted by the HIT development industry.  For example, for health risk appraisals (HRAs) there is no agreement about standards for the algorithms or for reporting on them and there is nobody overseeing or accrediting their use.  Sometimes they get it right, sometimes not.  If we really are trying to get the best tools developed that will address the needs of the widest number of people, we need this.

Gruman: I can just hear those developers now: “More government interference with the marketplace!”

Chris Gibbons:  Well you are right: many vendors will try to argue that usability is essentially in the eye of the beholder.  However, there’s a vast field of human factors engineering (ergonomics) and a literature that explains and sets forth principles of usability that shows that in many cases, if you understand characteristics of the users and the context of use, you can build to overcome the limitations of both.  For example, the National Institute of Standards and Technology has just released a report on evaluating and testing the usability of electronic health records.

It’s not like usability is an amorphous thing or that we don’t know what it is.  Standards would reflect the state of the science and would save developers time and money in discovering these things themselves – or not, I guess. It takes time and money to take into account what is known about how individuals use different technologies for different purposes.

But think about it: Apple has spent a HUGE amount of money on exactly this issue. This is the reason their products are so easy to use and so difficult to use incorrectly.  If you are willing to spend the effort and make the investment to build on what is known, the product will be better.

If you think people’s engagement in their health care can be improved through their use of technology, you have to be sure engagement is not just possible for a privileged few.  You have to ensure that individuals’ use of technology can be improved maximally for anyone who uses it…and that it can and should be available for EVERYONE.

What’s Engagement Now? Experts Discuss Emerging Challenges series:

• Embedding Engagement into Quality Measurement – Patricia Barrett
• Time, Tools and Temperament- Requirements for Engagement: Douglas Kamerow
• Making Health Care Quality Information Useful: Carol Cronin
• The Growing Complexity and Prevalence of Caregiving: Gail Hunt

Interviews with CFAH’s Ziff Fellows on the challenges of patient engagement:

• Trudy Lieberman,  journalist for more than 40 years and contributing editor of the Columbia Journalism Review
• Dale Shaller, Principal of Shaller Consulting Group
• Connie Davis, geriatric nurse practitioner and health care consultant
• Molly Mettler, Senior Vice President for Healthwise
• David Sobel, Medical Director of Patient Education and Health Promotion for The Permanente Medical Group
• Kate Lorig, Professor at the Stanford University School of Medicine and Director of the Stanford Patient Education Research Center
• Shoshanna Sofaer, Robert P. Luciano Professor of Health Care Policy at the School of Public Affairs, Baruch College
• Judith Hibbard, Professor of Health Policy at University of Oregon & lead author of the Patient Activation Measure (PAM)
• Carol Alter, Director of Policy and Community Outreach and an Associate Professor in the Georgetown University Department of Psychiatry