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Can you tell me about your overall experience with healthcare? How do you organize your healthcare? What, if anything, is challenging about organizing your healthcare? When you have questions about your healthcare, who do you ask? What advice would you give someone who was coordinating their care with multiple providers? What has your experience been with your various health care providers having access to your records? If you could give advice to providers about what would make your visits be better coordinated, what would you say to them? Characteristic* Survey Participants (N = 1017) Interview Participants (N = 25) Age (yr), mean (range) 51 (18–99) 52 (27–73) Sex, n (%) Male 433 (43) 11 (44) Female 580 (57) 14 (56) Race, n (%)† African American 546 (55) 11 (48) White 373 (38) 12 (52) Hispanic/Latino 21 (2) 0 (0) Asian 21 (2) 0 (0) Other 32 (3) 0 (0) Education, n (%) Some high school 113 (11) 1 (4) High school graduate/GED 325 (33) 6 (24) Vocational training/trade school 68 (7) 1 (4) Some college 208 (21) 6 (24) College graduate 286 (29) 11 (44) Living situation, n (%) At home, by self 182 (18) 4 (16) At home, with someone else 797 (80) 20 (80) Nursing home/assisted living 9 (1) 0 (0) Other 8 (1) 1 (4) Has a regular doctor, i.e. primary care physician, n (%) Yes 842 (85) 22 (88) No 154 (15) 3 (12) Usual source of care uses electronic health records, n (%) Yes 739 (78) 20 (83) No 42 (4) 2 (8) Unsure 169 (18) 2 (8) All medical care in same system as ED, n (%) Yes 441 (45) 10 (40) No 493 (60) 15 (60) Unsure 54 (5) Has seen doctors outside of same system as ED, n (%) Yes 778 (79) 21 (84) No 212 (21) 4 (16) Primary care physician helps with care coordination, n (%)‡ Checked 259 (27) 9 (36) Unchecked 705 (73) 16 (64) ↵* Figures for each question reported for only those survey participants for whom a response was recorded.
↵† Survey question asked to “check all that apply”; sum of percentages >100 as a result of multiracial participants.
↵‡ Survey question read “Who helps you coordinate your healthcare?” and asked to “check all that apply”; figures reported for selection of “My primary care physician” option.
ED, emergency department.
Theme Satisfaction with Care Coordination Dissatisfaction with Care Coordination Perceptions of communication between providers And that the doctors all talk to one another. Like when I had problems with my kidneys, and I saw a nephrologist at [Hospital Name 1], so he was able to tap in with my—my cardiologist spoke with him. So those two spoke and then said, okay, you know what? Yeah, this is not looking good; so let's change some of her medication that she's taking for her heart. I think that what they should do is get together—before they talk to the patient, get together and converse about it. And then tell the patient. Because what it looks like is that they don't communicate with each other. One's saying one thing and another saying another thing, and that's what makes it seem like they don't know what they're doing. Communication between [my doctors] is fine. Communication between all three of them, I have no idea. I have to keep telling people over and over again what my history is. No matter where I go, and I always say can't you just call up my doctor? […] They say no. No, we can't. I actually do more communicating with the different doctors—which I shouldn't have to do—than my doctors do. Role of EHRs in information exchange Well, actually everything as far as technology-wise, is things go easier. They had the patient portal and stuff like that. So everything is actually getting to them. Everything actually improved, especially with the technology. I felt like that should be something that you're able to pull up on your computer and see the results of my two tests that you just asked me about right at your fingertips. So that's what I'm saying when I mean disconnect. And he's kind of looking at me like—I said, you didn't get that? […] he still uses the paper files and taking out a piece of scrap paper to jot things down. Information exchange across health systems If it's a [Hospital 1] doctor, they have everything right there right on the computer. And it doesn't have to be in [Location 1]. It could be in [Location 2] or it could be in [Location 3]. Wherever he is, they're all networked. And that's a really wonderful thing. I think everybody should be on that page. I wish sometimes the different hospitals can communicate a little bit—the medical records could be more effective in letting the—for example, I wish that [Hospital 1] could've gave them the information when they requested it, instead of have them do it two and three and four times. I guess […] it's been good because I was all a part of the network, so all my doctors could see, when I had discussed that test, the results and everything. It was in the computer. So that worked out well for me. And then getting the stuff from [Hospital 1], my medical records from [Hospital 1], so they could update it at [Hospital 2] was a nightmare. So finally […] we got my records from [Hospital 1], and we got home to send them to [Hospital 2]. Well, they were password protected and the password was nowhere to be found. Support for care coordination from primary care providers When I have to go to my different appointments [my primary care provider] do help with that. She gets me […] whatever referral I need it for. She do do that. When I call the primary doctor to order [referrals], they're like, well you're the one that's supposed to be coordinating this. I said, you're coordinating my medical. I'm not coordinating it. And then they say, well maybe the specialist should be coordinating it. […] So, it costs me even more money because I'm not using all of my insurance because no one's coordinating it. My primary care physician at [Hospital 1] sends me a message in the [Hospital 1] system and says, I got your blood results, everything was good. He sends it to me every week. My primary care physician, he's awesome. He's so busy, but he does it. EHR, electronic health records.
