Ethnography & Models 1
What is ethnography? From the science of anthropology A methodological strategy Holistic Mostly qualitative Field study Based on the concept of culture Participant observation 2
What is ethnography? From the science of anthropology A methodological strategy Holistic Mostly qualitative Field study Based on the concept of culture Participant observation 3
Culture Culture, or civilization, taken in its broad, ethnographic sense, is that complex whole which includes knowledge, belief, art, morals, law, custom, and any other capabilities and habits acquired by man as a member of society. 4
What is ethnography? From the science of anthropology A methodological strategy Holistic Mostly qualitative Field study Based on the concept of culture Participant observation 5
Fieldwork rules of thumb 1. Be open and curious 2. Be voracious about details 3. Enter the natives world 4. Listen deeply 5. Ask why? 6. Pick up on language 7. Look for inconsistencies, gaps, contradictions 8. Work on multiple levels 6
Ethnography & Innovation in Healthcare Memorial Hospital South Bend Part of every improvement program Kaiser Permanente Garfield Center, Innovation Consultancy, CMI Mayo Clinic Sparc Patient Experience Lab Cleveland Clinic Chief Experience Officer & Experience Team 7
Our Respondents Patient Ages Hospitals Insurance Ethnicity County Distance to Hospital Time since Diagnosis Diagnosis 0-1yrs n=1 Lucile Packard Children s Hospital n=4 Private n=2 Caucasian n=3 1-12 n=4 Oakland Children s Hospital n=2 CCS/Medi-Cal n=6 African- American n=1 12-16 n=2 UCFS n=2 CA Healthy Families n=2 Latino, Spanish speaking n=2 17+ n=1 Sutter Sacramento & UC Davis n=1 Latino, English speaking n=2 San Mateo, Santa Clara, Alameda, Shasta, Stanislaus, Monterey n=1 each 50+ miles n=3 Less than 18 months n=2 Complex n=7 More than 18 months n=6 Type 1 diabetes n=1 Asian-American Cantonese n=1 San Francisco n=2 8
Our research topics Diagnosis and treatment story View of system and their interaction model Family caregivers and their roles Interaction with payors and financial situation Coordination of care Communication with providers & others Information resources and overall knowledge Impact on family Expectations for child s future Emotions throughout 9
Models & Modeling Customers buy holes, not drills - Ted Levitt 10
Models & Modeling Shortcut to make sense of or interpret complex information Label Model Filter or lens to: Understanding Make decisions Generative models expose a gap or opportunity 11
Models & Modeling AHA Dependent Adapts to environment and people Manager Project oriented, assembles relevant info Bravado Proud, strong, hides personal weaknesses Ethnic Strongly anchored in cultural traditions Believer Connects behavior changes to religious beliefs 12
Models & Modeling Huggies Disposable Waste Bandage Model Symbol of Future Success Model 13
Models & Modeling Huggies 14
Model 1 Stages of the Experience Pre-Diagnosis Crisis Diagnosis & Treatment Reentry New Normal Maintenance & Complications Prep. for Transition Transition Wall Pre-Diagnosis perception that clinicians don t take concerns seriously Feel need to push for more (e.g. 2 nd opinion) Time 15
Model 1 Stages of the Experience Pre-Diagnosis Crisis Diagnosis & Treatment Reentry New Normal Maintenance & Complications Prep. for Transition Transition Wall Crisis adopt tunnel vision at expense of family, job, other Information comes fast and fragmented Especially hard for non-english Time 16
Model 1 Stages of the Experience Pre-Diagnosis Crisis Diagnosis & Treatment Reentry New Normal Maintenance & Complications Prep. for Transition Transition Wall Reentry abrupt transition from lots to little help Resources don t always carry forward Parents fear lack of hospital safety net Time 17
Model 1 Stages of the Experience Pre-Diagnosis Crisis Diagnosis & Treatment Reentry New Normal Maintenance & Complications Prep. for Transition Transition Wall New Normal challenge to integrate medical care and everyday life activities Struggle to accept child is disabled Risk of complacency Time 18
Model 1 Stages of the Experience Pre-Diagnosis Crisis Diagnosis & Treatment Reentry New Normal Maintenance & Complications Prep. for Transition Transition Wall Prep. for Transition first arises around 13-15 yrs old Concerns range from peer pressure to caring for oneself Time 19
Model 1 Stages of the Experience Pre-Diagnosis Crisis Diagnosis & Treatment Reentry New Normal Maintenance & Complications Prep. for Transition Transition Wall Transition Wall where patient falls off child services Time 20
Model 1 Resource Access Family Support Services Advocacy Services Disability Specific Agency Parent Groups Therapist Private Insurance Regional Center Online Groups BASE School Specialists Information THIRD Clearinghouses ORDER Camps Coordinator SW, NP, Etc Public Insurance PCP Counseling Workshops Transportation From a system level resources look overwhelming Families have a radial model of resources At the center, their base (hospital or clinic) includes their team of specialists Insurance, schools and therapists are in their next level of resources. Some families need assistance accessing this level Useful resources exits beyond their horizon, but most are unknown to families 21
Model 1 Resource Access Family Support Services Advocacy Services Disability Specific Agency Parent Groups Therapist Private Insurance Regional Center Online Groups BASE School Specialists Information THIRD Clearinghouses ORDER Camps Coordinator SW, NP, Etc Public Insurance PCP Counseling Workshops Transportation Coordinators are key to connecting families to resources Most were social workers, but also nurse practitioners and others Not every family has a coordinator Inpatient social workers aren t supposed to stay with patients after they leave Outpatient social workers are stretched thin with 50-100 families With these coordinators, the system doesn t appear so complex 22