Qualitative, quantitative and mixed methods in PCOR. Frances K. Barg, PhD, MEd

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Qualitative, quantitative and mixed methods in PCOR Frances K. Barg, PhD, MEd bargf@uphs.upenn.edu

Fitting mixed methods into your research

Expert (etic) vs. Lay (emic) knowledge

Hypothetico-deductive research Theory Hypothesis Observation Confirmation Expert driven Test relationships among known variables Test relationships among variables that experts believe to be important Standardized, normed, validated instruments

Hypothetico-deductive research Precise Replicable Generalizable In CER, A is/is not better than B

Hypothetico-deductive research Surveys Chart reviews Administrative databases EMR, Penn Data Store PROMIS

www.nihpromis.com

HOWEVER

Patient experience may be very different from expert perspective Patienthood is culturally shaped Meaning of illness Beliefs about etiology Beliefs about treatment Beliefs about suffering Beliefs about fate Beliefs about accepting help Therapy management group Sick role Context matters

Illness experience may be very different from expert perspective Biomedicine is a culture too Scientific method Beliefs about illness Classification systems ICD DSM

Coming together Experience

Health behavior models Value expectancy theories Risk perception, self efficacy, behavioral intention Rational choice Limited consideration of: Cultural models Social facts Structural factors Meaning Historical trauma Framing Power imbalance

Need for an expanded paradigm

Inductive research Observation Patterns Tentative hypothesis Theory Inductive Contextual factors Emic Provides depth Ideal when little is known about a topic

Designing a mixed methods PCOR study Clear and concise research question Whose question is this? Patient engagement in the design and conduct of PCOR studies design decisions what kind of question are you trying to answer? What kind of data do you need? Sampling strategies Purposive sampling data collection Engage with patient ideas Many strategies Ethnography Interviews Focus groups Cultural consensus analysis Narrative analysis; thematic analysis, structure of the story- cultural cues Develop typology Ethnographic Decision Modeling Content analysis Life histories Case studies data management data analysis

Designing a mixed methods PCOR study Clear and concise research question Whose question is this? Patient engagement in the design and conduct of PCOR studies design decisions what kind of question are you trying to answer? What kind of data do you need? Sampling strategies Purposive sampling data collection Engage with patient ideas Many strategies Ethnography Interviews Focus groups Cultural consensus analysis Narrative analysis; thematic analysis, structure of the story- cultural cues Develop typology Ethnographic Decision Modeling Content analysis Life histories Case studies data management data analysis

Effectiveness implementation hybrid designs Type 1 Primary aim: clinical effectiveness Secondary aim: context for implementation Type 2 Primary aim: effectiveness Co-primary aim: feasibility etc of implementation strategy Type 3 Primary aim: utility of an implementation strategy Secondary aim: clinical outcomes Curran, Bauer, Mittman, Pyne, Stetler, Medical Care, 50(3): 217-226, 2012

Reasons for Hospital Admission Question: What words describe the things that led to the patient s (your) hospitalization this time? Patients Caregivers,, Trouble Breathing, Heart Issues, Medical Issues, Swelling Medication Non-Adherence, Poor Diet Adherence, Disease Progression, Access to Medication, Lack of Social Support Clinicians

ADLs Social support Instructions Management Financial Emotions Cluster 1 n=88 Low Low Low Low Low Low Cluster 2 n=62 High Low Low Moderate High High Cluster 3 n=35 High+ High High High High High Cluster 1: older, more likely to be male, retired, self-rated health is better, fewest prior admissions for HF Cluster 2: younger, more likely to be female, more likely to be disabled, self-rated health is fair Cluster 3: more likely to be unemployed, have poor self-rated health, most prior admissions for HF

Where to turn? Institute for Biomedical Informatics http://upibi.org/ Bioinformatics core provides professional bioinformatics services including data analysis and consultation Clinical Research Informatics core provides computational services to support the use of clinical data for biomedical research IBI Idea Factory is a visual analytics facility designed to facilitate collaboration and promote new ways of communicating and presenting scientific innovation Biostatistics Analysis Center (BAC) http://www.pennbac.org/ Biostatistics analysis and programming Data management Collaboration on study design and proposal development

Where to turn? Clinical Research Computing Unit (CRCU) http://www.cceb.med.upenn.edu/crcu Clinical data management Research technologies Project operations and compliance Research design, development and quality assurance Mixed Methods Research Lab (MMRL) https://www.med.upenn.edu/mmrl/ Consultation regarding qualitative and mixed methods Proposal development Data collection Data management Data analysis

Punchline Need a varied toolkit to answer PCOR questions What you know depends on how you know it There are resources at Penn that can be helpful

Questions and Discussion