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PATIENT ENGAGEMENT IN HEALTH
RESEARCH
Patricia Wilson PhD
University of Kent
UK
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Changing relationships
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A change in western society?
.
..“one that synthesizes the values of consumerism and
citizenship, and which challenges public authorities,
professions and the public themselves to rethink their
relationships, roles and responsibilities”
Bob Sang 2004
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Sea change…
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The passive patient
•Radical monopoly
•Biomedical model
•Labelling
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Changes since the 1980’s
• Scandals
• Other health professionals
• Changes in disease patterns
• Informed service users
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Internet use
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Partnership
patient knowledge
Professional knowledge
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World Health Organization (2013)
Macro level
• Engagement in decision-making at strategic level
Meso Level
• Engagement in decision-making on local committees
Micro level
• Engagement in care (self-management)
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Health research: what’s in a name?
• Participation
• Engagement
• Involvement
We worked in small groups to make some suggestions. We wrote our ideas on hexagons and pinned them to the wall.
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Experience
Engagement
Involvement
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Arnstein’s ladder
• Public control
• Delegated power
• Partnerships
• Placation or tokenism
• Consultation
• Information
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Patient/citizen engagement in health
researchResearch being carried out “with” or “by” members of the public rather than “to”, “about” or “for” them.
INVOLVE 2012
Macro
Micro
Meso
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Patient/citizen engagement takes many
forms
Consultation
Advise on recruitment
Randomized controlled
trials
Partnership
Working as co-
researchers
Community based
participatory research
Consumer-led
Leading the research
Mental health research
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Why involve patients/citizens in health
care research?
• Moral
• “nothing about me without me”
• Democratic imperative• Public funding of research
• Methodological
• Insight
• Effectiveness
• Credibility
• Cost effective
Professor Dame Sally Davies, Chief Medical Officer England
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Outcomes of patient/citizen engagement -
measurable?
• Complex social intervention
• Which outcomes?
• Impact on the research design?
• Impact on the research outcome?
• Impact on those involved?
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Types of evidence
MORAL
“working with” rather than “doing
to”
.
Patient and public
satisfaction with levels of
engagement
METHODOLOGICAL
Improved research
processes
Impact in each stage of the
research cycle
POLICY
Supportive infrastructure.
Embedded PPE/PPI in
health research as normal practice
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Community based participatory research
(CBPR) (Lazarus et al 2012)
• Community as unit of identity, solutions & practice
• Community engagement at all levels of the research
• Multi-level focus of change
• Diverse theory & methods; critical approaches
• Co-learning & mutual benefits
• A long term process aimed at improving health equity
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Participatory Research in Ottawa, Management
& Point-of-care of Tobacco
PROMPT Study• 96% inner city drug
users smoke
• 44-80% wish to quit
• Social networks of
insecurely housed
• Community research
centre in downtown
Ottawa
• 4 peer researchers
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Barriers to engagement in CBPR• Tokenism (Hicks et al 2012, Muhammed et al 2014)
• Power differential between academics & community (Lazarus et al 2012, Muhammed et al 2014)
• Different agendas of research team & community (Lazarus et al 2012)
• Assumptions about capacity of community members to be involved.
• Young people (Jacquez et al 2012)
• People with dementia (Keedy et al 2007)
• Is citizen engagement being enabled to have an impact?
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Meeting the promise of patient/citizen
engagement
• Embedding
patient/citizen
engagement as
everyday practice
• Understanding how
best to do this
• Lessons learned from
the English experience
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Why should PPE/PPI be embedded as
normal practice in England?
• Policy imperative
• Requirement for
funding
• Extensive
infrastructure
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Research design services
Research delivery
programs
Topic specific networks
Research teams
Funding committees
Research commissioners
Members
of the
public
INVOLVE
UK Clinical Research Network
• National Institute of Health Research
• Research Councils UK
• Major charities
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INVOLVE• INVOLVE was established in 1996, as Consumers in NHS
Research
• 2006 became part of and funded by, the National Institute for Health Research, to support active public engagement in:• NHS research
• public health research
• social care research.
• It is a national advisory group that brings together expertise, insight and experience in the field of public engagement in research
• It aims to advancing public engagement as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated.
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A study evaluating public engagement in
health research in England (RAPPORT)
• 30 month study
• Survey followed by 22 in-depth case studies
• Public engagement tracked over 18 months
• How embedded was public engagement as normal
practice ?
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How did everyone
understand PPE/PPI?
Was everyone buying into PPE/PPI?
What were they actually doing & who was doing
this?
What did they think good PPE/PPI
looked like? How were they judging this?
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Case study example 1
• Increasing physical activity of older people in the
community
• Researcher led
• Focus groups to refine intervention
• Advice on participant information
• A community representative on project steering group
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• Understanding
• Confusion - citizens as study participants or involved?
• Buy-in
• “I wouldn’t say it has added value…”
• Doing
• No training or support for researchers or citizens
• Judging success
• Activities logged but no follow up
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Case study example 2
• Design of an on-line self-management programme for people with diabetes
• Co-production of the programme
• Content identification through focus groups
• Programme production by a group of 10
• 2 group members on project steering group
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• Understanding
• Understood as integrating real-world knowledge
“to keep the researchers in touch”
• Buy-in
• Full commitment of all but some underestimation of what citizens
would be able to do
• Doing
• Funding and clear agreements on tasks
• Judging success
• Constant feedback but no systematic evaluation
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Case study example 3
• A systematic review of the evidence on peer support of parents with children with cognitive disabilities
• Topic area suggested by parents• Large group of parents linked
to a research centre
• Sub-group of co-researchers
• Involved in all of research process except data extraction from the research papers
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• Understanding
“enriches our research but also enriches lives”
• Buy-in
• Full commitment of all
“it’s hard to imagine not doing it because it’s our whole reason for
being”
• Doing
• Well resourced and structured. Mutual respect
“I know I’m just a mum” and the researchers say “No, no, you’re the
expert of your child…”
• Judging success
• Systematic using an evaluative tool
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Fully embedded citizen engagement
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1. A clear purpose, role & structure for
patient/citizen engagement is ensured
within the study
• Researchers &
patients/citizens
• have a similar
understanding of what is
meant by patient/citizen
engagement
• understand what is
expected of them
• agree what patient/citizen
engagement will bring to
the study
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2. Active recruitment of patients/citizens
likely to have an understanding of the
diverse viewpoints of study population
• Seldom heard
populations
• Out-reach model
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3. All researchers in the team sign-up to
citizen engagement
•Tokenism
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4. Mutual acknowledgement,
understanding & trust in each other’s
contribution
• The importance of relationships
• Time
• Fragility
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5. Opportunities for citizen engagement
throughout research process
Priority-setting
Study monitoring committees
Influencing funding decisions,
questions, relevance, outcomes,
Recruitment strategies, PI sheets,
plain English summaries
Dissemination results
People are involved in...
Promoting use of results
Research Excellence Framework
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6. On-going reflection & evaluation of
citizen engagement for improvement
We worked in small groups to make some suggestions. We wrote our ideas on hexagons and pinned them to the wall.
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citizen engagement embedded throughout the
research process
Identification of priorities & topics
citizen sensitive measures
Enhanced recruitment
Dissemination & implementation
Outcomes for consumers & researchers
“Virtuous cycle”
Studies led to future studies
EMBEDDED citizen
INVOLVEMENT
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Conclusion
• To enable impact of citizen engagement
• Develop a common understanding of what
engagement means
• Believe in engagement as a way to improve
care
• Commit the resources for effective engagement
• Monitor and adapt engagement as it develops
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The final word to a citizen…
…it’s so helpful that
I can do something
constructive, I can
say something that
might influence
something that
might help…