1. Levels of involvement Consultation Collaboration User control
THEME 2: Unit 5 - Part B
Levels of involvement in research can range from:
Consultation
Collaboration
Trainer Notes
PRESENTATION:
There are 3 main levels of involvement in research and development. If you are consulted you are asked for your opinions or views on a matter. They may be taken into account but there is no guarantee this will be the case and you may not know what happens the research project.
If you are collaborating, then you are an active partner in the research process and you share or are delegated some of the responsibilities. Users and carers share decision making and their opinions are given equal weight with health and social service staff. They usually find out what happens in the whole process of the research and development project.
If there is user control then users and carers lead the research. they may ask health and social service staff to do specific tasks for them, but the overall responsibility for the project lies with the users and carers.
User control 1A

2. Consulting about research
THEME 2: Unit 5 - Part B
Consulting about research
This is often the starting point for a research and development project – finding out what research people think should be done in a particular area.
The key tasks in this stage of the research and development cycle are to:
identify what topics you believe need to be researched
within these topics, select the top priorities – these are areas that are more urgent and more likely to be funded
Trainer Notes
PRESENTATION:
In summary, consulting about research
Present above points, then say: One way of doing user involvement for this step is for researchers to go to groups of users with their research ideas and ask them for their opinions using these questions. Another way is for user and carer groups to consult with their members and then approach research programs and advocate for topics to be researched. 1B

3. Consulting about research
THEME 2: Unit 5 - Part B
You may be invited to be involved through one or more of the following methods:
Group discussions – researchers may:
come to existing user and carer groups or associations
set up special group meetings
run a session at a user and carer conference
Written questionnaires – researchers may send them out to:
existing user and carer groups or associations
users and carers at a specific health and social services
advertise the opportunity to provide input and then provide the questionnaire to people who register with them
Trainer Notes
PRESENTATION:
Present above points. 1C

4. Consulting about research
THEME 2: Unit 5 - Part B
Consulting about research
Other methods include:
Phone surveys – researchers may arrange for a service or existing user or carer association to call their users and carers directly and do a survey by phone
Website feedback forms – researchers may advertise the opportunity to provide input, give a website address and you can fill out a questionnaire or form on the Internet and submit it
Panel or steering group member – You may join a panel or steering group that focuses on research and development activity in a specific area and has the job of reviewing the identified topics to select priorities
Trainer Notes
PRESENTATION:
Present above points, then say: In any way you get to be involved it is very important that you make sure that the language being used is easy to understand. The researchers’ job is to explain the ideas in plain English. Ask for clarification if you need it – you are probably not the only person who would like to ask that question. Sometimes other health and social service staff also do not understand so you may just help them out too. 1C

5. Identifying topics
THEME 2: Unit 5 - Part B
If you are asked to identify topics and are not sure what to suggest, here are some questions to get you thinking:
What are some of the problems in that area of health and social services?
Are there any gaps in service provision? Why do you think they are there?
What needs to be improved or changed?
What would we learn if we researched this area?
Who would find it relevant if we researched this area?
Who would benefit from the outcomes?
Trainer Notes
PRESENTATION:
Present above points, then say: You will get an opportunity to try this out soon. 1E

6. Selecting priorities
THEME 2: Unit 5 - Part B
Once topics are identified priorities must be selected
Funding for research is always limited, so not every topic will get support - questions to help you with this task include:
What topics are the most important? Why?
Which one will provide outcomes that will make the most difference?
Which one will provide outcomes that are most likely to be acted on?
Trainer Notes
PRESENTATION:
Present above points,then say: Users, carers and the public might be involved in this step by being in a focus group or completing a questionnaire. Stronger involvement happens if you join health and social service staff on a research panel or steering group. 1F

7. Why is this stage important?
THEME 2: Unit 5 - Part B
Consulting about research and development, especially with users and carers, is important because it:
determines what research is carried out
influences how public money on research is spent
responds to what users and carers believe are the important issues when dealing with health and social problems
emphasises that research must relate to what happens in people’s everyday lives as users and carers, and as health and social service staff
Trainer Notes
PRESENTATION:
Present above points, then say: Here is a short case example: 1G

8. Case Example – User consultants in an NHS Research Program
THEME 2: Unit 5 - Part B
Purpose:
The NHS Health Technology Assessment program wanted to trial ideas for creating stronger user involvement within the Program
They involved people at several stages of the research and development cycle, but here we will concentrate on the consulting about research stage, in particular, prioritising identified topics
Trainer Notes
PRESENTATION:
Present above points, then say: The HTA program decides on what the national research priorities are and who will get funded to do research in the health technology area. They employed a person who was a service user with strong research experience to set up and run the user involvement project and evaluate how it went – this was Sandra Oliver. They also had two users on the project advisory group. 2A

9. Setting up the program
THEME 2: Unit 5 - Part B
The program manager identified user consultants by:
public information campaigns about the HTA program
informing self-help or patients’ representative groups and national charities (with a health focus)
contacting health information services
telling journalists
Users registered their interest to be involved:
of these, six users decided to join an HTA advisory panel
there were two users per panel and 8 health and social service staff members
Trainer Notes
PRESENTATION:
The project manager invited users to be involved in several ways for the five main tasks for the HTA program. We will concentrate on one task – user involvement on the HTA Program advisory panels. This is where they prioritise and select what topics should be researched.
Present above points 2B

10. Roles of the user consultants
THEME 2: Unit 5 - Part B
User consultants:
were full members of the three panels that met twice/year
had to read 15 brief summaries about research needs to help them with prioritising topics – this happened between the first and second meetings held in the year
researchers preparing the summaries had to consult users about how they did this - at the first meeting the user consultants recommended who they could talk to based on their own networks
after reading the summaries, at the 2nd meeting they then discussed the research topics and voted for their priorities
Trainer Notes
PRESENTATION:
Present above points 2C

11. Support provided to user consultants
THEME 2: Unit 5 - Part B
The user consultants:
received training through an induction day along with other new non-user panel members
observers from INVOLVE (Consumers in NHS research) were present - user speakers took lead roles on the day
gained support from the Chair of each panel who they could speak to about any issues
had administrative support from the HTA Program for managing the paperwork involved
were not paid an honorarium during this trial of user involvement
Trainer Notes
PRESENTATION:
Present above points 2D

12. Level of influence or decision-making
THEME 2: Unit 5 - Part B
User consultants were seen as equal team members of the panels who could:
discuss ideas
influence other people’s opinions
vote like any other member
There were more health professionals (8) than user consultants (2) on the panels
Trainer Notes
PRESENTATION:
Present above points 2E

13. Activities that happened
THEME 2: Unit 5 - Part B
Each panel met twice a year to:
consider the information about research priorities
discuss the issues
vote on what the priorities will be – this would set up the areas in which researchers could put in proposals
The panels did not select who got to do this research - called commissioning – this was a different task and involved reviewers across the country including users, carers and/or their organisations
Trainer Notes
PRESENTATION:
Present above points 2F

14. Outcomes achieved The HTA Program found that:
THEME 2: Unit 5 - Part B
The HTA Program found that:
they need to make sure there are adequate resources for user involvement, including payment for honorariums and staff time
they need to provide more support for user consultants, including more training, mentoring, debriefing and giving a clearer understanding of their and all panel members’ roles
they need to support health service staff to become more ‘bilingual’ in discussing research with users so it is easier to understand and discuss
Trainer Notes
PRESENTATION:
The HTA program learned many things through their trial of all of their user involvement strategies. They plan to improve their user involvement work based on the trial. The learning about user consultants involved on panels included:
Present above points. 2G

15. Strategies for success
THEME 2: Unit 5 - Part B
Training user consultants
Support form the HTA program staff – particularly those running the user involvement project
Preparing the HTA Advisory Group panel chairs for the project and getting their cooperation and willingness to support users as panel members
Trainer Notes
PRESENTATION:
Present above points 2H

16. Problems that occurred
THEME 2: Unit 5 - Part B
Heavy workload for user consultants
they received advice and support from panel chairs to help manage this
Feeling isolated in their role
this was not addressed - user consultants recommended that in future they are mentored by an experienced panel member
Trainer Notes
PRESENTATION:
Present above points 2I

17. Problems that occurred
THEME 2: Unit 5 - Part B
Different attitudes to and support for user involvement by other panel members
this was managed by the panel chairs, but more support from HTA staff to help them look after group dynamics may help
Discomfort between user consultants and other members
mistakes and difficulties were discussed openly to reduce tension
Trainer Notes
PRESENTATION:
Present above points 2J

18. Benefits achieved
THEME 2: Unit 5 - Part B
User perspectives did influence what the final research priorities were, as they could see different knowledge gaps to health professionals
Other panel members learned about user involvement and became more positive about it
The HTA has continued with a strong commitment to user involvement
They set up a mentoring program for all new user consultant panel members, clear job descriptions, briefing papers for tasks and appropriate remuneration
Trainer Notes
PRESENTATION:
Present above points 2K

19. Thinking about practical issues – what does it mean for you?
THEME 2: Unit 5 - Part B
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
Trainer Notes
PRESENTATION:
When you are thinking about the practical issues of involvement there are some key areas that you should check through. You will find that some ideas fit with your expectations for support:
Present above points.
Note to Trainer: If this group has done Core 2 – Unit 2: Part C then they have covered this material. Remind them that they have already discussed these issues. If the group has not done this part of the training it may be useful to go back and do some of that with them. 3A

20. Thinking about practical issues – what does it mean for you?
THEME 2: Unit 5 - Part B
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
Trainer Notes
PRESENTATION:
Present above points, then say: Now we need to think about which of these may present some practical issues if you decided to get involved in consulting about research. 3B