CER 2016 Dohan EQUIP

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
By KATIE HAFNER SEPT. 28, 2015

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. 5http://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 (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
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
A
g
g Conserv.Conserv.
A
g
g

11. 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

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 (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
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