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February 3rd 2011

Film-based research methods and rehabilitation science: New tools for inquiry, knowledge translation and public engagement

Dr. Janet ParsonsApplied Health Research Centre, Keenan Research Centre, Li Ka Shing Knowledge Institute, St. Michael’s Hospital and Dept of Physical Therapy, University of Toronto

University of Toronto Department of Physical TherapyRehabilitation Rounds, February 3rd 2011

February 3rd 2011

Overview• Background: developing a program of research using film-based

methods• Methodological development: Brokered Dialogue

• Theoretical underpinnings• Method

• Project 1: Understanding controversial public drug funding decisions using Brokered Dialogue

• Project 2: The Ontario Citizens’ Council – Brokered Dialogue to understand a deliberative process

• Project 3: Creative Works Studio: • What’s art got to do with it?

• Contexts for application relevant to physical therapy

February 3rd 2011

Relevant background

• A qualitative methodologist trained in interpretive social scientific approaches

• A clinician• Doctoral work employing narrative methods

– “Duh, I would have been in your film!”– Desire to share stories with broader audiences

• Postdoctoral work• Health of marginalized populations/health equity• Dialogic narrative and film: the beginnings of Brokered Dialogue

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Methodological Development

Brokered Dialogue

A new film-based research method

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The inspiration for Brokered Dialogue

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Dialogue• Dialogue = “through words”• Foundation of social and political life

– Discourse that reveals/examines people’s fundamental values and interests

– How we come to know one another• Deliberative democracy

– How we confront and accommodate diverse interests in a range of public contexts

• Assumptions: • People are willing to engage in dialogue about important issues

• Dialogue can reveal can aspects of phenomena

• Transformational features of dialogue

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Dialogue

• Barriers to dialogue– Fear of confrontation/establishing

relationships– Stigma/marginalization– Lack of appropriate contexts of dialogue– Disparities in education and/or language skill– Power/influence determines whose

perspectives are taken into consideration

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Theoretical underpinnings: Narrative and dialogue

• Privileging stories and their accessibility to a range of audiences

• Stories as evidence that inform behaviour• Descriptive and prescriptive function of stories• The interactive nature of storytelling (stories begetting

stories)• Informed by Frank, Morris, Ricoeur, Levinas, Gadamer• Relationship between ‘self’ and ‘other’• Dialogue and storytelling at the heart of healthcare and

its delivery (e.g. the clinical encounter)

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Why film?

• Representations matter – shape the experiences of those who are represented or mis-represented (Berube)

• Seeing the face of the other is powerful• Richness of data collected, multiple dimensions for

analysis (language, gesture, emotion, context)• Film is a familiar & accessible medium, engaging to a

broad range of stakeholders• Participant-driven editing process, so film = a ‘safe’

space for interaction• Also informed by visual anthropology (ethnographic film)• National Film Board: Challenge for Change (1960s)

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Brokered Dialogue Method: Data Collection and Analysis

• Filmed interviews with participants eliciting their views• Participant-driven editing process (field notes and audio tapes)• Sharing of video accounts with one another and reactions filmed• Participant-driven editing process (field notes and audio tapes)• Sets of multiple accounts integrated into a short film (‘cut’)• Narrative analysis of individual and interactive accounts (visual and

textual data)

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Analysis

• Multiple levels of analysis:• Thematic analysis via coding of individual interview transcripts• Incorporated into the editing process (also analytical)• Narrative analysis: looking not only at content, but form and tone of

stories told by participants• Analysing the interaction of perspectives (what they take up or resist

in the accounts of others)• Analysing what participants choose NOT to include on film• Analysing important silences related to the topic• Analysing the reactions to the assembled footage (the ‘brokering’

process)

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The Projects

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Project 1Understanding controversial public

drug funding decisions using Brokered Dialogue

The case of Lantus insulin

James Lavery, Janet Parsons, Wendy RowlandFunding source: CADTH

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Project 1: Background• Purpose:

– to explore the feasibility of applying the Brokered Dialogue method in the context of a controversial public drug funding decision

• Controversy: – disagreement among “stakeholders” about the decision not to fund – Disagreement arises from very different perspectives – Ideal for focus on dialogue

• Context:– Recent and “live”– Diabetes high prevalence disease– Large market, therefore public cost implications and public stewardship

implications are considerable

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Potential

The Brokered Dialogue Concept

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Potential Current Reality

The Brokered Dialogue Concept

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An Example

Venus & Mars? A Brokered Dialogue

A film about controversial public drug funding decisions

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www.youtube.com/watch?v=rJeD7UMk38Y

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What we learned• Exploring the role of values in decisions and their uptake• Cost-effectiveness analysis (CEA) doesn’t incorporate the full range

of relevant values• How to deal with subpopulations who might benefit• Role of ‘public’ in decision-making and opportunities for

improvement identified• Which ‘public’ perspectives should be represented?• Appropriate mechanisms?

• Method feasible• ‘Brokerage’ role more complicated that we’d anticipated – editing

and assemblage are part of this• Research ethics of doing film-based research• Evaluation

February 3rd 2011

Project 2: Ontario Citizens’ Council on drug system reform

Brokered Dialogue for Research and Evaluation of a Deliberative Process

Janet Parsons, Jim Lavery, Muhammad Mamdani, Andreas Laupacis, Sanjeev Sridharan

Funding source: MOHLTC (via ODPRN grant)

February 3rd 2011

Background and context

• New process for including public perspectives on drug funding decision-making

• Modeled on the NICE framework in the UK• Inclusion of societal values in decision-making process –

provincial level funding• Intention: to study this new process as it evolves, provide

evaluation of a complex ‘intervention’, and develop knowledge translation tools

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Methods• Brokered Dialogue• Audio taped interviews• Focus groups (collective perspectives)• Filmed observations• Ethnographic observations (fieldnotes)

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Project 3: The Creative Works Studio and film-based knowledge translation

“What’s art got to do with it?”

Isabel Fryszberg & Janet Parsons

Funding source: CIHR

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Background• Creative Works Studio: an innovative arts-based

vocational rehabilitation program for those recovering from mental illness

• Partnership between St. Michael’s Inner City Health Program and Good Shepherd Non-profit Housing

• Over 12 years in operation, considerable interest in the program

• Knowledge translation through film:• Program’s benefits and unique contributions• Participants’ experiences of the studio• Role of the studio in the recovery process

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• Participatory approach (participants help with study design, ‘passing the camera’, sample generation, editing, presentations)

• Capacity-building• Another art form to engage

with• Evaluative component:

– How might this change how you view mental illness?

– What did we learn?

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Trailer

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Emergent themes• Experiences of stigma• Identity reconfiguration: ‘from patient to artist’• Discourses of criminality in mental illness• The relationship between creativity and mental health• Contrasting CWS with other approaches to rehabilitation• A creative community

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Contexts for application in physical therapy

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What’s in it for physical therapy?• Many contexts for application• Useful tools for primary research, for knowledge

translation, and public engagement• Accessible formats• Thematic analysis and participatory editing are akin to

writing up quotes within journal articles• Highly efficient at conveying complex ideas and a wealth

of data• Participants’ own words are privileged

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• Potential topic areas many and varied:• A few examples:

• Future directions with current Project 9: New model for Ontario Family Health Teams and physical therapy’s role

• Funding/delisting of physical therapy services• Disaster management, resource allocation and rehabilitation (global

health)• Disability and health equity research (reducing stigma, community

engagement)• Work-related injury and the compensation system• Clinician-patient communication (and communication divides)• Interprofessional communication divides

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Contexts beyondControversial social and healthcare issues

• Global health and community engagement initiatives• Health technology assessment and decision making• Resource allocation • Policy and practice research related to flu vaccination• Researchers and research ethics boards• Health equity

February 3rd 2011

Acknowledgements• Jim Lavery• Wendy Rowland• Andreas Laupacis, Art Slutsky, Muhammad Mamdani• Study participants• Isabel Fryszberg• Kat Cizek, Heather Frise, NFB• St. Michael’s Hospital• Canadian Agency for Drugs & Technology in Health

(CADTH)• CIHR• MOHLTC