1. “They don’t ask so I don’t tell them:” Patient-Provider Communication about Traditional, Complementary and Alternative Medicine (TCAM) North American Primary Care Research Group Tucson, AZ 10.17.06 Andrew Sussman, PhD, MCRP Brian Shelley, MD Robert Williams, MD, MPH Alissa Segal, PharmD NIH/NCCAM 5R21 AT002323-01/2

2. Study Setting: RIOS Net New Mexico PBRN 250+ members –Academic (UNM) –Community Health Centers –Indian Health Service Underserved, minority populations

3. RIOS Net TCAM Priority 1.Background: –Current lack of TCAM communication –Adverse drug/herb interaction 2.Research Questions: –Predicting patient TCAM use –Patient-provider communication 3.Goal: Improve communication

4. Study Methods—Qualitative Approach Exploratory, sequential qualitative design Importance of pilot process Iterative review and analysis Purposive Sampling –Patients: urban/rural; cultural groups (NA/Hisp) –Clinicians: practice system/specialty

5. Study Methods—Qualitative Approach Clinic Staff Focus Groups (8 clinics) Patient Interviews (93) Provider Interviews (14) Provider Focus Groups (1)

6. Results 1. Predicting Patient TCAM Use 2. Patient TCAM Communication Factors 3. Provider TCAM Communication Factors

7. 1. Results: Predicting Patient TCAM Use TCAM as “primary” care No clear patterns— “everyone is at risk” Foundational –Community/cultural traditions –Family context –Life experiences Situational/Relational –Health status/illness severity –Experiences with provider and clinic –Proximity to “home”

8. 1. Results: Predicting Patient TCAM Use “Well, we are Latinos, Mexican; we come from traditions that are like that. First, our parents would always use some kind of herbs, for example, to ease stomach pain or kidney pain, things like that. Even though we came to the United States we are still following the customs. For my kids, when they have a cough, I prepare them a tea using an herb, before bringing them to the doctor, and I think that it helps...But if I see that they are not getting better, then I bring them in to see the doctor, but first I try to make them feel better with an herb or home remedies.”

9. 2. Results: Patient TCAM Communication Factors perceived provider receptivity to TCAM recognition of TCAM use as part of cultural identity (“who I am” vs. “what I do”) expectations about the clinician’s knowledge of TCAM

10. 2. Results: Patient TCAM Communication Factors cultural “distance” between provider and patient providers don’t ask or ask in ways that are not recognized by the patient high degree of trust in provider (“…if they recommended it, I would try it”)

11. TCAM Communication Disconnect PATIENT : AS: How do you think your doctor would respond if you told them about the other things you were doing? PT: I think sometimes they don’t believe they work. But a lot of people are going for that, and I think they do work. AS: Is that why you don’t discuss it, or is there another reason? PT: No, they don’t ask me, so I don’t tell them. PROVIDER AS: So, where does discussing TCAM fit in your hierarchy of things? PROV: I think if I heard more of it coming from my patients, I would feel more stimulated to go out there and get myself informed. But if they’re not bringing it up, then I’m not.

12. 3. Results: Provider TCAM Communication Factors Structure of the Clinical Encounter Perceived Role in Protecting Patients Provider lack of knowledge

13. 3. Results: Provider TCAM Communication Factors Perceived lack of evidence-based data Desire to Protect Patient-Provider Relationship Scientific training

14. 3. Results: Provider TCAM Communication Factors PROV: “If I knew more about the kinds of herbs that are used more commonly in our state and in our city, maybe if I put it out there, people would be more forthcoming. I wasn’t trained to use alternative medicines, and I use it very cautiously, because being trained in western medicine like I am, it’s hard to be the first, the cutting edge people using a medication. It’s always a lot more comfortable when, you know, several million people have used it and there’s a bunch of studies out already and you can kind of see how it’s going and the problems have come up and they’ve been discussed.”

15. Ideas to Improve TCAM Communication Brief questions for the clinical encounter: “How did your family take care of you when you were a child?” “Do you believe in using herbs and/or traditional ways to care for yourself?” Role of Increased Knowledge : TCAM related—TCAM databases, CMEs Community/Cultural context— TCAM terminology; interviewing techniques

16. Conditions Affecting TCAM Discussion TCAM Communication PATIENT Non-judgment TCAM use part of cultural identity Provider/clinic receptivity How/whether TCAM discussion initiated by provider Prior experiences with TCAM discussions PROVIDER Relevance of TCAM discussion to clinical relationship Personal TCAM beliefs Expectations to be TCAM expert Fear of endorsing something unsafe, unproven Scientifically-based skepticism Unaware patients expect provider to ask

17. Family Care Context Life Experiences Community/ Cultural Context Core Beliefs “who I am” Patient/Provider Relationship Care Decisions “what I do” Health Status/ Transitions

18. Patient Care Decision Making R … sometimes a person knows when, if the sickness should be taken care of by a medicine man. Q And how does a person know that? R I don’t know, I think it’s just in your blood or something. Probably from dreams and stuff like that. Q But as a child you came to the doctor first, you think? R Yeah, for minor stuff. I’ll still go to a doctor to get checked, but if they keep sending me home with pills or something like that then I’ll see a medicine man. Q Those times you were saying you went to a medicine man first, were those for different kinds of… R … mostly the times I went to a medicine man was just for answers that the reason why I’m the person that I am and stuff like that. Or why I think the way I do, and how am I being directed or… just answers. That’s why I go. Q Why would you come here first? R For a sore throat, or ear ache, or pink eye. Or, I don’t know… stuff like that – athlete’s foot.

19. Data Collection—Interview Guides 1.Clinic Staff Interviews— local knowledge, rapport building; modify approach and content 2.Patient Interviews— health care decision making; communication about TCAM with provider 3.Provider Interviews— communication about TCAM with patients; prioritization of TCAM counseling; identifying patients who use TCAM 4.Provider Focus Group— review preliminary analytic framework with different providers

20. Providers: Talking (or not) about TCAM PROV: “I think even with western stuff I am the old dog. There’s not many new tricks that I am going to get into. I think that there’s so much overwhelming need for just the basics of well child checks, maternal, and infant. So there’s not a lot of ways of bringing in alternative kind of stuff, its pretty bread and butter. I birth them and I enjoy hospice so I see them out. See um’ in see um’ out. I enjoy it so much that I don’t try to expand, that sounds bad, to expand my practice more then whatever comes in the door. I just can’t.”