An Interview with Alice Noblin, PhD: Dispelling Common Myths about Patient Interest in Personal Health Records

In this interview, we spoke with Alice Noblin, the Health Informatics and Information Management Program Director at University of Central Florida about research she led into patient and family attitudes towards PHRs and the surprises she found in the data.

Alice, I’m going to begin by asking you to give a bit of background for a couple of minutes and then we’ll dive into the research that you’ve published and then we go wherever the conversation takes us if that’s all right?

Currently, I am the program director for an undergraduate program at the University of Central Florida called Health Informatics and Information Management.  Back in the old days, when I got a degree in this field, it was called “medical records,” so it has expanded quite a bit over the years and changed its name to better describe the curriculum.

In the U.S., we have a national organization AHIMA (the American Health Information Management Association), that kind of guides those of us in the field along.

In the last five or seven years or so, I decided to pursue a PhD and the personal health research that you read about was actually the dissertation research that I conducted about three years ago.  But my interest in the field also derives from personal reasons.

My parents were both elderly and my mother had congestive heart failure. We kept kind of an old fashioned PHR on her, although we didn’t go online and log things.  We just, every day, kept a log of her pulse oximeter rates and her blood pressure. We tracked her weight especially because we wanted to see if she was gaining a pound or two which could mean she might be retaining fluid in her lungs and might need diuretics and things like that.  I began to realize the value of this kind of record.  And although my mother really couldn’t interpret it, I was able to look at it and see when the weight went up for a couple of days, the doctors had told us we could increase the diuretic dosage and we were able to keep her out of the hospital and quite honestly keep her alive for a couple years at home by doing that.

When the opportunity came to do the PHR research at the physician offices, I was really interested to see how people felt about the ability to keep that type of information on themselves.  That’s how all this work came about.

There are a number of things that you said that were really interesting, so I’m going to get to them one by one.  Let me start with the basics because the dissertation that you published was basically around the kinds of people who are interested in PHRs and the kind of engagement that you get.

When I was starting a few years ago, the common understanding was that if you’re doing well, you can get about five percent of the population engaged with a PHR. The traditional demographic, moreover, is what I like to call the “Ws:” White, Well, Wealthy women. They were pretty much the only group who go through the process of keeping and tracking this kind of information. But your research has you finding that there’s a completely different demographic that’s available and often overlooked.  Talk to me about what you found.

In the U.S. we have Medicare for the elderly of course but we have Medicaid for the people who need public assistance.  I knew going in that the majority of the patients that would comprise the study were Medicaid patients.  Most people who were asked did in fact complete the survey. It turned out that three quarters of them basically said that they would use the personal health record if the physician’s office offered it to them. Most of them are indeed white women, but with incomes below $20,000 a year. Their highest level of education was high school.

What’s interesting to me was the fact that in spite of these income and education disadvantages, we saw strong interest in access to a PHR.

These results dispel some myths around PHRs. The reason I’m interested in this is that one of the things we do with physicians at Patients Know Best is push them to consider whom they would normally overlook and whom they assume would not want to engage in this type of technology.

We tend to spend a lot of time saying, “Even though you think we’re wrong just try it, just offer the patient the opportunity.”  When they do, they’re often surprised by the positive engagement.  So with your research, you went and did that and documented it.

What was the feedback you were hearing from these patients on why they wanted to do this–why they would find it useful?

I think it’s just the reasons that a lot of us would want to do it.  Convenience is one reason.  To save them having to come back to the physician’s office for lab work results so they wouldn’t have to miss work.

Some people, legitimately, were concerned about coming back in to a sick environment, so to speak, where they might catch something from somebody else.  I think it would be the same reasons a lot of people that weren’t in that socioeconomic category would still want to have a PHR.

It’s interesting to learn that one of the reasons you found for interest in a PHR is to avoid missing work. For example, in the UK, so many of the physicians who say no to PHRs stated they worry about the “digital divide.” It’s only the wealthy patients who have smartphones who can afford to use PHRs, they claim, and that therefore you’re leaving an entire and disadvantaged population behind.

Actually one thing that’s missed is not everyone has a job where they can comfortably take time off to go to a doctor’s appointment.  It’s a real hardship for a lot of people to actually take time off to go for that appointment.  If you’re trying to even out the digital divide, actually giving them the ability to interact with their physician, get their results without having to take time off work, is a big deal and a powerful reason to offer access to PHRs.

Let me dig a bit deeper into the results. Did you get a sense for how the patients access the internet or use digital resources?

Most of the people had internet access. But, a lot of them said, “I don’t use the internet.” Some even said right off the bat, “I’m not going to do the survey because I don’t use the internet.”  I would say to them, “Well, I still need your opinions.  If somebody else could go online for you, like a friend, or if you could go to a friend’s house or a sibling or a daughter–that type of thing.”  I got the idea that most of them could get online if they wanted.

Another issue that you brought up is in the case of your family, for example, even though your mother wasn’t that interested, you, as the daughter, were able to work with the PHR on her behalf.  Were you seeing that kind of phenomenon as well with the respondents?  Were some of them saying, “I wouldn’t do it for myself but I’d do it for somebody else?”

Yes, some might say, “I wouldn’t do it, but my daughter might do it for me.”  I know one reason I had a much higher response rate from women was because if a couple came in typically the man would turn to the woman and say, “You fill out the survey.”  There’s quite a bit of literature that women are usually the record keepers for the family.  If there’s an intact family they’re usually the record keepers.  They are the record keepers for the children as well.  They keep track of the immunizations, for example.

Let’s get back to the research data. The question of literacy and socioeconomic status was fascinating. Did you look at any other variables?

Yes, we looked at several different angles besides literacy.  I used the Technology Acceptance Model as the theoretical basis as well as their health status. Regarding health status, we didn’t use any clinical data but instead relied on people’s opinion about their health.  What was quite interesting was that the health status was not a significant factor.  That wound up being not being significant at all in this population.

So What would you say was the single most significant factor then in their PHR interest?

The literacy piece was significant as well as the issue of “technology barrier.” In other words, when you use a computer are you afraid you’re going to make mistakes or are you intimidated by it?  Are you confused by it?  Are you afraid you’re going to destroy data? These were the types of questions we used to quantify the technology barrier, which turned out to be pretty significant in determining whether someone felt comfortable enough to use a PHR. There’s quite a bit more detail, which you can read in the study itself.

I really love that you did this study and found these results, especially because they are surprising to common wisdom about income and the broader “digital divide.” Thank you again for your time. It was a pleasure to learn more about your research.

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