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The majority of health care utilization decisions in the United States are made by persons with multiple chronic conditions. Existing public reports of health system quality do not distinguish care for these persons and are often not used by the consumers they aim to reach.
Our goal was to determine if tailoring quality reports to persons with diabetes mellitus and co-occurring chronic conditions would increase user engagement with a website that publicly reports the quality of diabetes care.
We adapted an existing consumer-focused public reporting website using adult learning theory to display diabetes quality reports tailored to the user’s chronic condition profile. We conducted in-depth cognitive interviews with 20 individuals who either had diabetes and/or cared for someone with diabetes to assess the website. Interviews were audiotaped and transcribed, then analyzed using thematic content analysis.
Three themes emerged that suggested increased engagement from tailoring the site to a user’s chronic conditions: ability to interact, relevance, and feeling empowered to act.
We conclude that tailoring can be used to improve public reporting sites for individuals with chronic conditions, ultimately allowing consumers to make more informed health care decisions.
In spite of evidence that consumers want more information on health care provider performance, there is limited use of current reports to make informed health care decisions [
Consumers with multiple chronic conditions are a priority population for tailoring public reports because they have a continuing need to know how to best manage their health conditions to avoid complications and improve their health [
We examined whether tailoring existing public reports on health care quality to persons with diabetes and co-occurring chronic conditions would increase their engagement with the reports. Using four principles of adult learning [
As recommended in the 2025 vision for public reporting [
To create a website that tailors information for the user, we used four principles of adult learning: (1) adult learners’ experience, (2) involved adult learner, (3) problem-centered, and (4) relevance and impact to learners’ lives [
To recruit, flyers advertising the study were posted at local libraries, grocery stores, community centers, senior centers, university buildings, and a local hospital. Additionally, we placed an ad in a local paper. Only individuals who had diabetes and/or cared for an individual with diabetes were eligible. Those interested in participating in the study were screened via telephone by the University of Wisconsin Survey Center. We expected our study population to be older, white, and college educated based on the demographics of the local population. Once we reached 20 participants, we closed enrollment into the study. We based our sample size on the goal of saturation (ie, little new is being learned) [
Between April and May 2015, we conducted 20 one-on-one, hour-long, in-depth cognitive interviews. During the interviews, the participants navigated through the existing consumer-focused Web pages with Helen’s story while being asked scripted, open-ended questions related to (1) navigation of content, (2) validity of the content, and (3) understanding of the displays. The participants were then instructed to navigate through the newly adapted Web pages with Karen’s story while being asked the same scripted, open-ended questions plus questions about (4) their understanding of information presented for the chosen chronic condition profile, and (5) perceived value of the health care quality report presented for the user’s chronic condition profile. The interviews were audio recorded and transcribed. Short summary thoughts and notes were drafted after each interview.
We used thematic content analysis to identify, analyze, and report themes within our data. As a guide, we applied Braun and Clarke’s “six phases of analysis” in which coders (1) familiarize themselves with the data, (2) generate codes, (3) search for themes among codes, (4) review themes, (5) define and name themes, and (6) produce the report [
Our study population (n=20) was primarily female (n=13) with racial minorities making up 30% (6/20) of our sample (
The findings from our thematic content analysis support the concept that tailoring a public reporting website to a user’s chronic condition profile can increase consumer engagement. Participants found that the ability to interact (Theme 1) with the website to generate a chronic condition profile personalized their experience, whereas the addition of Karen’s story to the website increased the relevance (Theme 2) of the site because it presented the voice of an individual who has “other health issues” in addition to diabetes (
“It’s nice that, like, you can kind of put your conditions in and see how people are performing.”
“Well, right off the bat this is more personal because it’s involving my opinion or self-data. So, it’s more personal.”
“They should maybe have a box where you could actually type in comments because you might want to specify what issues you’re dealing with. I would like to provide more information.”
“...it’s really good to hear personal stories of people going through the same things—just to be able to relate to that...”
“She [Karen] said that she had other health problems in addition to diabetes, which a lot of people have and can probably relate to.”
“This one’s [Karen’s] a lot better. I just realized that this one [Helen’s] tells you nothing, nothing at all. This one right here is pretty much breaking it down for me. Karen’s—I can relate to her more.”
“I think that it’s just a way of knowing which health system would take care of you the best to manage your disease.”
“Well, if I’m changing insurance, and I have the ability to choose a doctor, I want to choose a doctor that knows what they’re doing.”
“It’s important to do your research, because that is true, some doctors, hospitals, and clinics are better when they’re dealing with patients with multiple issues...in addition to diabetes. I didn’t know that.”
Participant characteristics (n=20).
| Participant characteristics | n (%) | |
| 18-30 | 5 (25) | |
| 31-40 | 2 (10) | |
| 41-50 | 6 (30) | |
| 51-60 | 6 (30) | |
| 61-70 | 1 (5) | |
| Female | 13 (65) | |
| Male | 7 (35) | |
| White | 13 (65) | |
| Black or African American | 5 (25) | |
| Other | 1 (5) | |
| Unidentified | 1 (5) | |
| <$25,000 | 8 (40) | |
| $25,000-$40,000 | 4 (20) | |
| $40,000-$65,000 | 6 (30) | |
| $75,000-$100,000 | 1 (5) | |
| Unknown | 1 (5) | |
| Private | 8 (40) | |
| Medicare | 3 (15) | |
| Medicaid | 4 (20) | |
| Mix of Medicaid and/or Medicare with Private | 5 (25) | |
| Employed | 13 (65) | |
| Unemployed | 7 (35) | |
| High school diploma or equivalent | 3 (15) | |
| Some college | 7 (35) | |
| Associate’s degree | 2 (10) | |
| Bachelor’s degree | 7 (35) | |
| Master’s degree | 1 (5) | |
The process of answering questions about their chronic conditions allowed participants to interact directly with the site to create their chronic condition profile and, based on this profile, display information on which health systems perform best for a “patient like them.”
Participants saw value in interacting with the site to create a profile based on their conditions. One participant stated that it was nice to be able to select your conditions and receive more “personal” data. In fact, some participants would have liked the ability to interact with the site on an even more personal and comprehensive level via a comment box where they could be more specific about their health and conditions. Another participant suggested having a checklist of all possible conditions for the user to self-select. Our findings suggest that the more a user is allowed to interact on a website that reports on health care quality, the more engaged they may become with website and ultimately the information that the website provides.
Overwhelmingly, participants in the study found the website easy to navigate (90%, 18/20). Because the primary goal of the website was for participants to be able to create a tailored report on health care quality by self-selecting their conditions to create a chronic condition profile, the ease of navigating the website was an integral piece of allowing that interaction to take place.
Karen’s story (multiple chronic conditions in addition to diabetes) was viewed by the participants as being more relevant because Karen faced challenges similar to their own. Adding Karen’s story to the website provided a relatable narrator for the participants in our study. It was easy for them to “see themselves” in Karen’s story because she, like them, lives with diabetes and other chronic conditions. As one participant remarked, “There’s more to the issue of complicated diabetes...I don’t know many diabetics that don’t have other health issues.”
Participants viewed receiving a score on how health systems perform for an individual with diabetes and other health issues similar to theirs, as opposed to a score for all patients with diabetes, as significant to them as an individual. Providing a platform for consumers to identify their conditions, to create a profile, and receive a score on health system performance that is personalized for them allows consumers to “see” themselves in the data. This increased the relevance of the health care quality report being communicated because it was specifically related to the consumer and their chronic condition profile. When asked if the website tailored to their chronic condition profile provided more value compared to the untailored website, 13 of 20 participants said yes, 3 participants did not comment, and 4 found no additional value.
The process of self-selecting their conditions and receiving personalized data on how health systems perform for a “patient like them” created a sense of empowerment for the participants. This feeling of empowerment was stimulated by providing a report that showed which health systems perform best in managing patients with their similar chronic condition profile.
Participants suggested that knowing how health systems perform for individuals similar to themselves may influence where they would seek out care. For example, one participant stated they would be more likely to see a provider if the data showed they were good at treating patients with a similar profile to theirs. Participants also thought they would find this information particularly valuable if they were changing insurance. This highlights the importance of making public reports available to consumers at times when they are most likely to make a decision about their health care including health care insurance coverage (eg, open enrollment periods).
Lastly, Karen’s narrative served as a prescriptive guide for participants on how they should interact with their provider to better manage their health. One participant stated, “If you don’t understand something, you have to be honest. And you have to say (to your provider), you know, ‘I don’t understand.’” Other participants felt empowered by the narrative to initiate conversations with their provider and become more of an active participant in their health.
The development of personalized or customizable report cards has been identified as an important priority to the success of consumer-focused quality reporting [
Our specific approach of tailoring a public reporting website based on the principles of adult learning as a framework represents a useful guide to increase consumer engagement. Multiple different strategies have been proposed to increase consumer engagement in public reporting, such as providing cost data, having patient comments and stories on the sites, better design, and providing information that is more relevant to the user [
There are multiple ways to tailor health information, such as matching to race, ethnicity, gender, or age [
Our study has several limitations. First, although building on the design of a preexisting consumer website as a basis for our assessment reduced development time and facilitated real-world testing, it constrained our options in presentation of data. Second, we had an overrepresentation of low-income and racial minorities in our sample compared to the expected population. However, our sample represents a high-priority population as a proposed strategy to reduce health disparities and improve health outcomes by making health information, such as public reports available to racial and ethnic minorities [
Although consumers want more transparency and information on health care provider performance, they do not use existing public websites that provide this information. We found that redesigning a public reporting website using adult learning theory is one way to potentially increase consumer engagement with these sites. Participants in our study valued their ability to interact with the website, felt the information on the site had relevance to them, and felt empowered to act based on the information provided. Our approach provides specific guidance on changing the content and format of public reports to engage and inform consumer decisions. A potential area for future study is how to tailor health system performance metrics to additional consumer attributes that might affect the quality of care (eg, race/ethnicity), to the relevance of diabetes in a person’s perception of health, or to awareness of other comorbidities, and how these might affect diabetes care.
Public reporting website storyboards.
Funding/Financial support: This project was funded by grant R21 HS021899 from the Agency for Healthcare Research and Quality. Additional support was provided by the Health Innovation Program, the UW School of Medicine and Public Health from The Wisconsin Partnership Program, and the Community‐Academic Partnerships core of the University of Wisconsin Institute for Clinical and Translational Research (UW ICTR) through the National Center for Advancing Translational Sciences (NCATS), grant UL1TR000427. Dr Magnan was supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through grant #UL1 TR001860 and linked award KL2 TR001859.
Role of the funder: The study sponsors had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and the decision to submit the manuscript for publication. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
We would like to thank the Wisconsin Collaborative for Healthcare Quality and the University of Wisconsin Survey Center for their assistance in the study.
None declared.