Good practice in obtaining user involvement in research

1
Good practice in obtaining user involvement in
research
Natalie Lambert, Research Advisor, SE RDSU
(Sussex) Professor Valerie Hall, Head, SE RDSU
(Sussex) Dr Sara Morris, Manager for User
Involvement in Research, RD NoW
South East Research Development Support Unit
2
WORKSHOP OUTLINE

• AIM to provide an overview on ways in which
  RDSUs
• can promote and support user involvement in
  research
•  
• Project involvement
• Facilitation and training
• Strategy development
• Activity 

3
Research Project Involvement
Natalie Lambert Research Advisor, SE RDSU
(Sussex)
South East Research Development Support Unit
4
OUTLINE

• Impetus rationale
• Definitions
• Levels of involvement
• Stages of involvement
• Other considerations in PI
• The job description model

5
IMPETUS

• 1996 Consumers in NHS RD
• 2003 INVOLVE
• Best Research for Best Health (2006)
• Partnership with all stakeholders
• Effective PI initiatives
• PI at all stages of research process
• INVOLVE maximising and monitoring PI in research

6
RATIONALE

• INVOLVE / BRBH
• more relevant to peoples needs and concerns
• more reliable
• more likely to be used

7
RATIONALE

• INVOLVE / BRBH
• more relevant to peoples needs and concerns
• more reliable
• more likely to be used
• INVOLVE
• different perspectives
• valued interventions and important outcomes
• improved recruitment and access
• user empowerment

8
DEFINING PUBLIC INVOLVEMENTINVOLVE definition of
public

• patients and potential patients
• people who use health and social services
• informal (unpaid) carers
• parents/guardians
• disabled people
• potential recipients of health promotion, public
  health and social service interventions

9
DEFINING PUBLIC INVOLVEMENTINVOLVE definition of
involvement
An active partnership between the public and
researchers in the research process
10
DEFINING PUBLIC INVOLVEMENTINVOLVE definition of
involvement
An active partnership between the public and
researchers in the research process
Research with or by the public
Research to, about or for the public
11
LEVELS OF INVOLVEMENT
CONSULTATION Lay views used to inform
decision-making
USER CONTROL Locus of power, initiative
decision making is with service users
PARTNERSHIP/COLLABORATION Active collaboration
between professionals and lay people
http//www.invo.org.uk/What_extent_to_involve_publ
ic.asp 
12
STAGES OF INVOLVEMENT

• Identification of topics
• Prioritising topics
• Commissioning research
• Designing research
• Managing research
• Undertaking research
• Analysing and interpreting research
• Disseminating research
• Evaluating research

http//www.invo.org.uk/pdfs/Briefing20Note20Fina
l.dat.pdf
13
OTHER CONSIDERATIONS

• Training needs
• Who to involve
• How to involve
• Developing working relationships
• Budgeting
• What happens afterwards

14
WHO TO INVOLVE
Who is the end user?
15
WHO TO INVOLVE
Who is the end user?

• TYPES OF USER
• patients
• informal (unpaid) carers
• guardians
• people who use health and social services
• members of the public who may be targeted by
  health promotion programmes

• TYPES OF ORGANISATION
• self help groups
• support groups
• expert patient groups
• voluntary campaign organisations
• pressure groups
• user controlled organisations
• advocacy groups
• PPI forums/ LinKs

16
MECHANISMS FOR INVOLVEMENT
Consultation meeting with sampling
frame Workshops Surveys Outreach interviews Focus
groups

CONSULTATION
Committees Steering groups Team membership Diary
reflection (evaluation)

COLLABORATION
17
DEVELOPING GOOD WORKING RELATIONSHIPS

• Information and communication
• Use of power
• Clarity of roles and responsibilities
• Facilitating meaningful participation
• Understanding and fostering interest
• Access needs (physical, circumstantial)

18
BUDGETING FOR PI

• Payment for involvement
• Travel, subsistence, care venue hire
• Administrative support
• Translation / interpreting / hearing loops etc.

Steel R. et al. (2003) A Guide to Paying Members
of the Public Actively Involved in Research.
Download from www.invo.org.uk
19
WHAT HAPPENS AFTERWARDS?

• Need for clarity re project end and ongoing
  involvement
• Celebratory meeting or event at project end
• Support possibilities for further involvement/
  training

20
USING A JOB DESCRIPTION MODEL

• Person spec.
• Experience
• Knowledge
• Personal qualities
• Duties and responsibilities
• Level of involvement
• Training requirements
• Hours of work, and project duration
• Payment
• Methods of payment
• Expenses covered
• Additional support available

21
Lessons learned from experience in facilitating
public and patient involvement in research
Val Hall Head of Sussex RDSU
South East Research Development Support Unit
22
Facilitation of public involvement in research

• Be clear about the level of involvement
• Citizen with rights approach rather than
  consumer approach
• Cross cultural challenges
• Thorough preparation in terms of understanding of
  the research
• Proper briefing
• Person specification and role description
• Clarity about the degree of involvement
• Motivation
• Co-ownership of the particular aspect of
  involvement
• Whole picture rather than an individuals
  experience
• Consider special needs but avoid paternalism
• Ensure Regular feedback to contributors at all
  stages

23
Facilitation continued

• Devise ways to enable safe participation
• Getting to know each other team and ice
  breaking exercises
• Relaxed and informal approach
• Regular breaks/opportunities to enable social
  mixing
• Link people together mutual support
• Support to develop skills of constructive
  challenge
• Confidentiality policy
• Consider visiting peoples world in some way
• Enough time for full contribution
• Recompense for expenses/contribution valuing
  strategies
• Physical requirements such as crèche,
  accessibility of buildings
• Acknowledgement and involvement in outputs
• Personal development potential

24
Research training

• Clear aim and purpose and centred around the
  specific research task and a real research
  problem and draw upon participants own
  experiences (adult learning principles)
• Ice breaking and social activities plenty of
  breaks
• Plain language avoid jargon
• Provide opportunities for service users to
  contribute creatively - communication and
  learning styles will be diverse
• Mutual respect in valuing each others expertise
  and sharing of knowledge is essential
• Accessibility of venue, appropriate equipment etc
• Recompense for time and expenses developmental
  v employment?

25
Resources

• Report summary Training for user involvement in
  health and social care research a study of
  training provision and participants experiences
  http//invo.org.uk/pdfs/TRUE20420page20summary.
  pdf

• Involving the public in NHS, public health, and
  social care research Briefing notes for
  researchers http//invo.org.uk/pdfs/Briefing20Not
  e20Final.dat.pdf

26
Public involvement development in Health RD
North West

• Dr Sara Morris
• Dr Sara Mallinson
• RDSU conference 2007

27
Involvement work at

• Workshops and awareness raising
• North West Users Research Advisory Group
• Individual advice and training
• Resource centre
• Partnership in research

28
History

• 2000 3 one day seminars in region North West
  Users Research Advisory Group (NWURAG) started
• 2001 facilitated focus group workshops
• 2002 training workshops started specific post
  for User Involvement created Report Making it
  Happen published
• 2005 User Involvement stream in our conference
• 2005/6 Success Stories project started
  developing new strategy to integrate public
  involvement more comprehensively into our work
• 2006 Public involvement in research networks
  event

Report available on our website
29
About NWURAG
Main aim to encourage and support the active
involvement of members of the public, service
users and/or carers in all aspects of
health-related research in the North West

• Mixed group of lay and professionally employed
  people
• Currently 26 members
• Lay/professional split about 50/50
• More outreach work recently
• e.g. How can public involvement work in research
  networks?

Report available on our website
30
The Success Stories process

• Aims to map and promote user involvement
  research activity across the North West

• Provide examples of good practice
• Create a resource people with expertise
• Encourage networking

31
Success Stories
Mapping Survey Aim to co-ordinate a resource of
people with experience and expertise in user
involvement May 2005 distributed widely across NW

• Conference
• Aims to disseminate and to encourage by example
  and through networking
• February 2006 held at Chorley

Report available on our website
32
Building on our work

• Our expertise, connections and previous work put
  us in a good position to develop a more extensive
  network aimed at supporting both professionally
  employed health researchers and interested
  members of the public.
• Public Research Engagement Partnership NoW
• To set up a facility for lay input into health
  research, by providing support, training and
  connections
• To support Virtual Learning Environments for
  public involvement initiatives
• To provide mentorship for developing public
  involvement initiatives
• To support the evaluation of public involvement
  initiatives

33
Some main issues to consider for good practice

• Access
• Practical (places, times etc.)
• Resources (money, time, training)
• Emotional and informational support
• Team building and supportive dialogue
• Valuing, learning and sharing
• Clarity of purpose and communication
• Responsibilities - who does what and when?
• Feedback
• Managing expectations and endings