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![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.](https://image.slidesharecdn.com/egakjzrtk6vopppayku3-signature-0fedb05369dc84abfa6bfecc1bd5e1b3eb40214438479aae5fc2d135e99d4771-poli-160225211515/75/CER-2016-Dohan-EQUIP-4-2048.jpg)
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CER 2016 Dohan EQUIP
This document discusses a project called EQUIP that aims to develop new methods for analyzing and displaying qualitative data in patient-centered outcomes research (PCOR). The project will draw on existing studies involving over 200 cancer patients to develop tools for extracting narratives from illness experiences. An "ethnoarray" approach is proposed to visually array patients' narratives based on domains like treatment decisions and social support. The goals are to engage stakeholders like researchers, providers, and patients to establish standards for using qualitative data in PCOR and assess new methods' feasibility in clinical practice. Challenges include bridging different disciplinary approaches, but the project sees opportunities to innovate at the intersection of qualitative and quantitative health research methods.
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CER 2016 Dohan EQUIP
- 1. EQUIP: Ethnographic and Qualitative Insights forPCOR 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 peoplelike 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 ByKATIE HAFNER SEPT. 28, 2015
- 4. 4 A minority ofthe 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 HAFNERSEPT. 28, 2015
- 6. 6 Methodologically, what should PCORdo with narrative? Challenges & Opportunities
- 7. • Challenge: Needto 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 samplesx 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 40407029* 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 closingthoughts • 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
Editor's Notes
- #3 Patient centered outcomes research answers these familiar questions. It’s what our methods are oriented towards achieving. The fundamental emotional question is: what do people like me do? Our PCORI project seeks to develop rigorous scholarly approaches that will improve our ability to capture some of this fundamental, underlying, emotional dynamics. Let me illustrate…
- #4 Our research team has previously conducted two qualitative studies of cancer treatment. Our Palo Alto-based team’s study of breast cancer treatment decision-making highlights that some women take a fairly aggressive treatment response to a diagnosis of unilateral breast cancer, that is cancer in one breast only. They opt to have a double mastectomy and have both breasts removed.
- #5 Our research team has previously conducted two qualitative studies of cancer treatment. Our Palo Alto-based team’s study of breast cancer treatment decision-making highlights that some women take a fairly aggressive treatment response to a diagnosis of unilateral breast cancer, that is cancer in one breast only. They opt to have a double mastectomy and have both breasts removed.
- #6 Stories can have vivid characters and complex plot twists. This is from last week’s NY Times – a profile of my colleague Dr. Laura Esserman – and it includes a story of a woman who Dr. Esserman counseled and perhaps convinced to change her mind against CPM.
- #7 If you do qualitative health research or if you are a patient or a family member or a caregiver of a patient who is making serious health decisions, I would submit that you suspect stories do matter. The question is: as PCOR methodologists, what do we do with these stories. And I think there are both some challenges and opportunities.
- #8 How do we “get” these narratives into scholarship so that PCOR can provide more meaningful answers to the questions of what do people like me do? We face a number of difficult challenges in doing so. But this also represents a rare opportunity to engage stakeholders who don’t typically work together. In the remainder of this talk, I’m going to briefly describe the approach we’re taking to the challenge of narrative integration and describe how we’re using this study as an opportunity for these various kinds of engagement.
- #9 Patient centered outcomes research answers these familiar questions. It’s what our methods are oriented towards achieving. The fundamental emotional question is: what do people like me do? Our PCORI project seeks to develop rigorous scholarly approaches that will improve our ability to capture some of this fundamental, underlying, emotional dynamics. Let me illustrate…
- #10 The inspiration: Basic/translational scientists have long drawn on compelling visual depictions of complex data – data that end up creating or telling narrative
- #11 What if we used a similar approach to represent the complex narrative data generated by ethnographic research, such as opting for a CPM after diagnosis with unilateral breast cancer?
- #12 This the first prototype – the vision – that represents the starting point for our PCORI-funded study.
- #13 Patient centered outcomes research answers these familiar questions. It’s what our methods are oriented towards achieving. The fundamental emotional question is: what do people like me do? Our PCORI project seeks to develop rigorous scholarly approaches that will improve our ability to capture some of this fundamental, underlying, emotional dynamics. Let me illustrate…
- #14 As a summary slide, here are the members of our stakeholder advisory board and how we plan/hope to engage them.
- #15 As a summary slide, here are the members of our stakeholder advisory board and how we plan/hope to engage them.