Are portals pushing away patients? A conversation with Michael S. Wolf Ph.D

Written by: Jason Free, Executive Editor

Michael S. Wolf Ph.D. is a health services researcher and a Professor of Medicine at the Feinberg School of Medicine at Northwestern University. Most of his research focuses on health system complexity and the methods patients have available to access and use healthcare systems to support their personal health. He and his team spend a great deal of time focused upon patients who have more chronic care needs and how the healthcare system is helping, or not helping, these patients stay engaged in their self-care.

In terms of healthcare IT, Wolf’s work focuses upon how patients today are gaining the opportunity to utilize a variety of consumer health technologies to stay engaged with their healthcare system whether it be a portal or using mobile apps. His work has found that a lot of these tools have not been well designed in terms of patient engagement and that they are even pushing away the patients who are in the most need of assistance. 

(Editor’s note: To hear audio excerpts of this interview, click on the media player buttons that run throughout this article.)

Free: Let’s talk about the research you’ve conducted relative to patient engagement and portals. Your findings outline how certain patient populations are not only not getting the information that is available to help them engage in their care, but portals may actually be pushing them away from their healthcare information. Is that correct?

Wolf: Yes, that’s correct.

To be clear, most of our research is focused on what we are calling lower health-literate patients. These patients, whether it be through a lack of health knowledge or access to good health information, show a concerning disparity in terms of the efficacy of patient portals. People who may have more limited health literacy skills, or limited capacity to properly engage health information, and use it to their advantage and make informed decisions, that tends to be a group that often times represents a number of disparities. Those who are older. Those who are more social economically disadvantaged. Those who belong to more racial-ethnic minority groups.

When we went into the study, we were asking the question: How would this specific population access information through a patient portal? To do so, you have to have computer literacy. You have to engage and remember your password. Then you have to have the knowledge necessary to find some functionality in the portal. We found that these issues are creating disparities within patient populations who may not have such technical capabilities.

As we went deeper into the study, we looked at two things. One, who has really enrolled in their patient portal? Two, if they were enrolled, among those who were enrolled, how are they using it? Was it a text or email to their provider to get information, did they look at lab values, etc.?

 We had the ability with a cohort study that I lead with the National Institute of Aging called LitCog. Through this LitCog study we could actually tap into a lot of their portal use based on this cohort of nearly 900 patients, and about 600 we looked at in this study. We wanted to look at among those individuals since we had information about their health literacy skills, their racial-ethnic backgrounds, their age, etc. and what disparities were we seeing and how people were using the portal. And the reason that we think that health literacy, or the lack thereof of adequate health literacy skills, was the driving disparity not the fact that any of these other kind of patient attributes were really driving it, but in fact, we did find, again, it makes sense that if you may feel less comfortable engaging on a computer and getting access to health information or maybe even not really understanding why the portal has any value that any of these things might limit your ability to get information or to be as timely and being able to review your information and to have that access to your healthcare provider that other patients who may be more health literate and as result also that seems to be those who are more likely to be white and maybe more affluent, etc.

Free: Your findings were specific to portals, correct?

Wolf: Yes. We only looked at the portal and we found many disparities, especially with mobile technologies, especially with racial-ethnic groups. Older adults, while we see exponential increase in access to having mobile phones or smartphones and actually being able to use the Internet by phone, the racial-ethnic disparity and the social-economic disparity in particular as well tend to be kind of fading away. In fact, you see higher smartphone use among younger to middle-aged populations in more racial-ethnic minorities groups than you would in a mainstream Caucasian population were they usually see the advantage. But in terms of healthcare purpose, using your mobile phone for healthcare purposes, that tends to drop considerably anyway. Right now we are just now seeing there is still a select few that are gaining the advantages of the Web and are able to make maybe more-informed decisions and to better critique the information they find on the Web.

In terms of disparities that we saw before with the Affordable Care Act uptake of Meaningful Use, we don’t see as many of those federally-qualified healthcare centers and other safety net health systems that disparity in them having electronic health record I think it’s starting to fade away because everybody’s getting the advantage in being driven toward at least having these platforms.

What we don’t know yet is whether or not those types of practices that serve maybe more vulnerable patients are starting to find ways, ways that some academic practices across United States are finding success, to better leverage these tools for patient purposes. That’s where we might still see the disparities. We may all have electronic health records now, or nearly everybody has electronic health records now, but the growing issue is whether not you’re using those electronic health records in effective ways is something we still don’t know.

In terms of the portal, which tends to be on the more progressive forefront of health IT, what we’re seeing is, and what we showed in our study, which is no surprise to us, is that the portals aren’t really getting many chronically ill patients engaged. 

These populations that we think are already plagued by having lots of disproportionate burden of chronic disease and poor clinical outcomes, suggesting a poor management for the disease, may be further driven down to even greater disparity because they’re not getting what we perceive as a benefit to the portal. But that’s also, just as a comment to our study, we still don’t even know if portals are even worthwhile. So, just because maybe more health literate, non-minority patients are more likely to use it and be better engage with the portal in terms of emailing their provider and being up-to-date with reviewing their information doesn’t mean that we think that that actually think that they are driving to better health.