PATIENT ENGAGEMENT IN HEALTH

RESEARCH

Patricia Wilson PhD

University of Kent

UK

Changing relationships

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

Sea change…

The passive patient

•Radical monopoly

•Biomedical model

•Labelling

Changes since the 1980’s

• Scandals

• Other health professionals

• Changes in disease patterns

• Informed service users

Internet use

Partnership

patient knowledge

Professional knowledge

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)

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.

Experience

Engagement

Involvement

Arnstein’s ladder

• Public control

• Delegated power

• Partnerships

• Placation or tokenism

• Consultation

• Information

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

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

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

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?

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

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

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

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?

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

Why should PPE/PPI be embedded as

normal practice in England?

• Policy imperative

• Requirement for

funding

• Extensive

infrastructure

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

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.

www.involve.nihr.

ac.uk

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 ?

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?

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

• 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

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

• 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

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

• 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

Fully embedded citizen engagement

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

2. Active recruitment of patients/citizens

likely to have an understanding of the

diverse viewpoints of study population

• Seldom heard

populations

• Out-reach model

3. All researchers in the team sign-up to

citizen engagement

•Tokenism

4. Mutual acknowledgement,

understanding & trust in each other’s

contribution

• The importance of relationships

• Time

• Fragility

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

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.

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

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

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…