1. EQUIP: Ethnographic and Qualitative Insights for PCOR Daniel Dohan, PhD Professor & Deputy Director February 2, 2016 Integrating New Data and Approaches to Advance Patient Centered Outcomes Research Methods

2. 2 What do people like me do? Given my personal characteristics, conditions, and preferences, what should I expect will happen to me? What are my options, and what are the potential benefits and harms of those options? What do patients diagnosed with early stage breast cancer decide to do? Do they decide to pursue aggressive therapy, e.g. prophylactic mastectomy? Do they take a more conservative treatment route?

3. Narratives of decision-making 3

4. 4 A minority of the people feels that we are going a bit crazy doing mastectomies when people have [DCIS]. It’s noninvasive and everything. And my first thought was, “You know, I’m not gonna have any treatment because I am a healthy person and this would not turn into invasive cancer…” then I had a biopsy and, and then I met with a few people and I read a bit more and…I began to think…how would I face my children if I told them that I was just sort of being arrogant in thinking, “You know, no, personally I’m not into treatment. I think it’s not necessary.” But what if I was worse and this did become invasive, and I have to tell my children that, you know, I did not have treatment because of this. So I began to change my point of view.

5. 5 http://nyti.ms/1Vn0rhA By KATIE HAFNER SEPT. 28, 2015

6. 6 Methodologically, what should PCOR do with narrative? Challenges & Opportunities

7. Challenge: Need to innovate to bridge disciplines –Narrative tradition = Dense, lengthy manuscripts Paucity of alternatives for communicating narratives to providers, patients, and other PCOR stakeholders –Distinct intellectual communities for holistic (qualitative) and reductionist (quantitative) scholarship Limited common ground on rules of evidence and nature of scholarly and scientific legitimacy Opportunity: Engage practice and scholarly communities –Build tools from illness narratives (patients/caregivers) and clinical judgment (providers) –Engage quantitative and qualitative health scholars to point out landmines –Identify common ground to support dissemination and implementation of new tools 7

8. 8 EQUIP Co-Investigators Corey Abramson, PhD Sociology, University of Arizona Dan Dohan, PhD Sociology/Health Policy, UCSF Sarah Garrett, PhD Sociology/Health Policy, UCSF Meghan Halley, PhD Medical Anthropology/Public Health, PAMFRI Kate Rendle, PhD Anthropology/Social Work/Public Health, NCI Pre-Existing Studies (n t = ~ 200) Cancer Patient Deliberation Study (UCSF) Influence of Others on Breast Cancer Treatment Decision Making (PAMFRI) Stakeholder Advisory Board  Non-Experts  Patients  Caregivers  Clinicians  Experts  Ethnographic Methods  Numeric and Mixed Methods  Critics Products 1.New standards for use and evaluation of qualitative data in PCOR studies 2.New methods… for analyzing and displaying ethnographic data for collecting qualitative, patient-centered outcomes data 3.Assessment of accessibility and feasibility of new methods in clinical practice

9. 9 Innovation… Microarray: Tissue samples x genes Source: Prat, A., and C.M. Perou. 2010. "Deconstructing the molecular portraits of breast cancer." Molecular oncology

10. Instead of tissues & genes… Strong social support Trusts the healthcare system Reads medical literature Willing to travel for Tx Quantity v quality of life Has a rare diagnosis Good insurance Communicates well with MD …narratives of treatment decisions AggAgg Conserv. AggAgg

11. Participant402040407029*7046*702840217044703240397042 DomainMeasure Wave01010101010101010101 Decisions Aggressive ther. Doctor shop Clinical Trial Commun- ication Trust MD Talk Lifeworld Team Health & Illness Live long time Daily activities Zebra Diagnosis Cancer prognosis Social Support Spouse Network Hi Social Capital Insurance & Finance Health Insurance Finances Housing Higher or More Intense Than Typical Typical Lower or Less Intense Than Typical Ethnoarray

12. 12 EQUIP Co-Investigators Corey Abramson, PhD Sociology, University of Arizona Dan Dohan, PhD Sociology/Health Policy, UCSF Sarah Garrett, PhD Sociology/Health Policy, UCSF Meghan Halley, PhD Medical Anthropology/Public Health, PAMFRI Kate Rendle, PhD Anthropology/Social Work/Public Health, NCI Pre-Existing Studies (n t = ~ 200) Cancer Patient Deliberation Study (UCSF) Influence of Others on Breast Cancer Treatment Decision Making (PAMFRI) Stakeholder Advisory Board  Non-Experts  Patients  Caregivers  Clinicians  Experts  Ethnographic Methods  Numeric and Mixed Methods  Critics Products 1.New standards for use and evaluation of qualitative data in PCOR studies 2.New methods… for analyzing and displaying ethnographic data for collecting qualitative, patient-centered outcomes data 3.Assessment of accessibility and feasibility of new methods in clinical practice

13. 13 Stakeholders in EQUIP Researchers –Technical and statistical issues in visual displays –Theoretical and epistemological critique –Professional and research infrastructure for implementation and dissemination Providers –Ensure accuracy of clinical information –Insights on feasibility & acceptability in practice Patients and caregivers –Code, interpret and transform data –What kinds of narratives matter? Are we getting the stories right? How can these tools be used to help patients understand their illness and treatment journey?

14. 14 A couple closing thoughts Interesting tensions and challenges have come up as we seek to engage stakeholders in a technical project, including how to represent engagement to PCORI –In this methodology project, highly specialized specialists have an essential role –And generalists have (or will develop) special knowledge and expertise Given its youth and mandate, PCORI has the potential to support unorthodox studies –“Skate to where the puck is going to be” Wayne Gretzky