Levels of involvement

1
Levels of involvement

• Levels of involvement in research can range from

Consultation
Collaboration
User control
1A
2
Disseminating research

• Disseminating is getting the message about
  research and development projects and their
  outcomes out to people who need to know about it
• When disseminating research you need to think
  about
• Methods - ways that you will get the message out
• Audience who you need to reach
• Level of user involvement what tasks and how
  much of them you get to do

1B
3
Methods for disseminating research

• Common or standard ways are
• Writing reports
• Writing a summary of the larger report
• Publishing in professional journals, magazines or
  on Internet websites
• Publishing in user/carer association newsletters,
  magazines or on Internet websites
• Writing a chapter in a book or writing a whole
  book
• Conferences or seminar papers and workshops
• Presenting a poster at a conference or seminar
  a short summary of the research and its
  outcomes on a large poster

1C
4
Methods for disseminating research

• Different ways include
• Writing a leaflet or short brochure (2-4 pages)
• Creating a poster that gives a summary of the
  project using words and pictures
• Running community forums to present and discuss
  the outcomes
• Speaking at Patient Forums, user/carer
  associations, self-help groups
• Holding workshops and inviting specific groups
  who may be interested in the research
• Talking on radio this may include inviting
  people to call in and discuss the outcomes with
  you
• Appearing on TV
• Creating a drama performance or role play

1D
5
Who is the audience?

• It can include
• health and social services staff and researchers,
  
• university research groups,
• government departments and local government
  shires,
• private companies who are involved with health
  and social services through the focus of their
  own work or sponsorship,
• users, carers and their associations,
• the media, and
• the public.
• It could include particular industries
  restaurant or catering, mining, agricultural - or
  schools and childcare centres

1E
6
Levels of involvement

• Users, carers and the public may be involved in
  several different ways
• Some ways are examples of consultation
• joining meetings or workshops to discuss the
  drafts of final versions with other people
  including health and social services staff,
  researchers and other users, carers and the
  public and to decide how the work should be
  disseminated
• reading and providing comments on drafts or final
  versions of the documents by writing a review or
  talking to the authors

1F
7
Levels of involvement

• Other ways are examples of collaboration
• co-writing drafts or final versions of the
  documents you want to produce
• co-presenting the outcomes at conferences
  seminars, patient forums, user/carer groups,
  community forums or invited workshops
• giving an interview to the newspaper or on radio
  or appearing on TV together with a health and
  social services staff researcher
• co-designing posters
• co-developing drama performances possibly also
  being involved in performing them

1G
8
Levels of involvement

• On some occasions they are examples of user
  control
• writing drafts or final versions of the documents
  you want to produce
• presenting the outcomes at conferences seminars,
  patient forums, user/carer groups, community
  forums or invited workshops
• giving an interview to the newspaper or on radio
  or appearing on TV
• designing posters
• developing drama performances possibly also
  being involved in performing them

1H
9
Why is this stage important?

• User involvement in disseminating research and
  development is important because
• Users, carers and the public may be aware of
  audiences who need to hear about the research
  that health and social services researchers may
  not
• User consultants can personally help share
  results through their personal networks,
  user/carer groups and associations
• User consultants can advise health and social
  services researchers about the most effective and
  suitable ways of getting the message across - the
  language and the ways of presenting it
• It demonstrates stronger commitment to user
  involvement in research and development if user
  consultants have a strong role in the
  disseminating stage

1I
10
Example 1 The Mental Health Foundation
Strategies for Living project

• Strategies for Living began in 1997. It
• Supports many user-led research projects across
  the UK
• some of these are examples of user control
• others are collaborative examples between users,
  carers and health and social services researchers
• funds them and provides training and resources on
  doing research, e.g. the DIY Guide to Survivor
  Research
• provides hands-on advice and support throughout
  every step the project, including writing the
  reports
• publishes them on The Mental Health Foundation
  website

2A
11
Example 1 Strategies for Living The ups and
downs of bipolar carers

• Lesley Jenkins is a mental health service user
  who lives with bi-polar disorder. She was funded
  by Strategies for Living to investigate the
  experiences, coping strategies and needs of
  carers who support a person with bi-polar
  disorder. She
• did 13 in depth interviews with carers of people
  with bi-polar disorder,
• analysed the information in the interviews
• wrote a report where she emphasised the need to
• increase awareness of carers needs with mental
  health services
• ensure that carers get appropriate support and
  understanding

2B
12
Example 2 The Alzheimers Society Quality
Research in Dementia Network

• They publish a monthly newsletter for the QRD
  Network which gives updates on the work of the
  network it is two to three pages long
• Every 6 months they do a bumper research
  newsletter eight or so pages long that
  provides
• what research they plan to or are funding and why
• summaries of completed research projects
• a list of all current projects
• progress reports on some of the current projects

2C
13
Example 3 SURE Service User Research Network

• User perspective is central to all of its work
  and almost all of its staff have been or are
  service users.
• It has a program of research that includes areas
  such as
• Consumers perspectives on electroconvulsive
  therapy
• Users and carers experiences of continuity of
  care and relationship to health outcomes
• User involvement in change management in health
  and social care services
• Young people, mental health and primary care
• It provides project summaries and progress
  reports on its Internet site

2D
14
Thinking about practical issues what does it
mean for you?

• Number of user consultants involved
• Costs of involvement
• What is the user consultant role description?
• Being prepared for the role
• At what stage are user consultants involved?
• Office space or equipment
• Number of methods for gaining user involvement
  used

3A
15
Thinking about practical issues what does it
mean for you?

• How much information you receive
• Handling confidential information
• Training
• Mentoring
• Your connection to a network of other users,
  carers, the public
• Debriefing opportunities or support
• Opportunity to reflect on what you learn
• Dealing with personal difficulties

3B