EQUIP: Ethnographic and Qualitative Insights for PCOR

Daniel Dohan, PhDProfessor & Deputy Director

February 2, 2016

Integrating New Data and Approaches to Advance Patient Centered Outcomes Research Methods

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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?

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Narratives of decision-making

By KATIE HAFNER SEPT. 28, 2015

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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.

5http://nyti.ms/1Vn0rhA

By KATIE HAFNER SEPT. 28, 2015

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Methodologically, what should PCOR do with narrative?

Challenges & Opportunities

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• 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

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EQUIPCo-Investigators

Corey Abramson, PhD Sociology, University of ArizonaDan Dohan, PhD Sociology/Health Policy, UCSFSarah Garrett, PhD Sociology/Health Policy, UCSFMeghan Halley, PhD Medical Anthropology/Public Health, PAMFRIKate Rendle, PhD Anthropology/Social Work/Public Health, NCI

Pre-Existing Studies (nt = ~ 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

Products1. New standards for use and evaluation of qualitative data in PCOR studies2. New methods…

for analyzing and displaying ethnographic datafor collecting qualitative, patient-centered outcomes data

3. Assessment of accessibility and feasibility of new methods in clinical practice

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Innovation…

Microarray: Tissue samples x genes

Source: Prat, A., and C.M. Perou. 2010. "Deconstructing the molecular portraits of breast cancer." Molecular oncology

Instead of tissues & genes…

Strong social supportTrusts the healthcare systemReads medical literatureWilling to travel for TxQuantity v quality of lifeHas a rare diagnosisGood insuranceCommunicates well with MD

…narratives of treatment decisionsAg g Conserv.Conserv.

Ag g

  Participant 4020 4040 7029* 7046* 7028 4021 7044 7032 4039 7042

Domain Measure Wave 0 1 0 1 0 1 0 1 0 1 0 1 0 1 0 1 0 1 0 1

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

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EQUIPCo-Investigators

Corey Abramson, PhD Sociology, University of ArizonaDan Dohan, PhD Sociology/Health Policy, UCSFSarah Garrett, PhD Sociology/Health Policy, UCSFMeghan Halley, PhD Medical Anthropology/Public Health, PAMFRIKate Rendle, PhD Anthropology/Social Work/Public Health, NCI

Pre-Existing Studies (nt = ~ 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

Products1. New standards for use and evaluation of qualitative data in PCOR studies2. New methods…

for analyzing and displaying ethnographic datafor collecting qualitative, patient-centered outcomes data

3. Assessment of accessibility and feasibility of new methods in clinical practice

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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?

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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