1. Engaging Vulnerable Consumers in Developing Useful Public Health Care Reports Funding by the Agency for Healthcare Research and Policy (AHRQ) grant number 1R21 HS021902-01. Daniel R. Longo, ScD Department of Family Medicine and Population Health drlongo@vcu.edu

2. Objective To identify what vulnerable populations with type 2 diabetes perceive to be important components in consumer reports and what might assist them in self- management.

4. Design, Setting, and Participants Qualitative study of 18 homogeneous focus groups of African American, Latino and non-Hispanic white individuals diagnosed with type 2 diabetes (n=92) from primary care clinics and churches in Richmond, Virginia, and a brief demographic survey.

5. Main Outcomes and Measures Patient-reported themes from focus group discussions about consumer reports for people with type 2 diabetes.

6. Results Participants expressed minimal interest in the types of information contained in traditional consumer guides that focused on provider performance; however, each focus group expressed strong desires for more information about diabetes.

7. Content Themes Two overall themes across groups included those that relate to the “content” of the report: (1) Comparative information on physician quality indicators would not be useful. “And you can’t just say, ‘Well, I want to go to a diabetes doctor just for that, and then I want to go to my general practitioner for everything else.’ You may or may not find that your insurance will cover it.”

8. Content Themes (2) Basic information is desired about various aspects of diabetes care, especially diet. “I just want enough for me to learn what to eat and what not to eat.” To that a male added, “[Present it in a way] That anyone can understand it. Bring it down to earth, so we can understand. Bring it all the way down ‘cause if you don’t, we’re lost.”

9. Report Dissemination Themes Two themes have implications on report dissemination: (1) Doctors as sources of information varied among groups. “We don’t really look for information, because we are only guided by the doctor.” (Latino Group) “People say, ‘Well, sit down and talk with your doctor.’ I don’t know what to ask him. You know, I’m relying on their expertise to take care of me and tell me what I need to do. But like I said, most of the times, you’re in there for five minutes, then you’re out.” ( non- Hispanic white group)

10. Report Dissemination Themes (2) Preferred format of information varied among groups. “We were talking about the Internet and stuff, but a lot of us don’t have access to computers or we’re not computer literate enough to know exactly how to go in and research and get information.” (African American group) “I would check it out on the Internet, then go to my doctor.” (non- Hispanic White group) “Not all of us have Internet access to look for that information, or some of us do have computers but we don’t know how to use it, so then we almost always go and ask a friend.” (Latino Group)

11. Report Dissemination Themes (2) Preferred format (continued) When asked by the moderator, “If you were going to look for information that we’ve listed today, what would be your preference: Would you prefer reading it, listening to it, or watching a video about it?” Latino and African American participants unanimously stated, “I would prefer video.” This was in marked contract with the non- Hispanic whites who expressed a desire to read the information either on the Internet or on a printed copy.

12. Report Dissemination Themes (2) Preferred format (continued) Also mentioned were: “support group[s], where if you can’t go to the doctor, to go to this group for support and guidance.” (African American group) And: “I prefer a structured situation, where you come in, attend a class. And then you get that rapport established where you can ask questions.” (non-Hispanic white group Which group?)

13. Conclusions and Relevance The information patients want in a consumer report is very different from what is typically found in health care consumer reports – patients reported less interest in comparative provider performance data and more interested in basic information about diabetes to assist in self-management. This overall finding stands in marked contrast to the concept of “performance reporting” typically found in consumer reports.