1. Levels of involvement Consultation Collaboration User control
THEME 2: Unit 5 - Part C
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. Commissioning research
THEME 2: Unit 5 - Part C
Commissioning research
After priorities have been set for research, this work must be commissioned – this means that the researchers receive the funding they need to go ahead with the project.
At this stage of the research and development cycle the following steps happen:
research priorities are made known to potential researchers, e.g. being listed on a research program website
researchers develop and submit proposals that focus on the priorities
proposals are reviewed and decisions are made on who will receive funding for their project
Trainer Notes
PRESENTATION:
Present above points, then say: In commissioning research the opportunities for involvement are with this last step. It can happen in two main ways. You may be a reviewer for a national or regional research program working alongside health and social service staff. You may be a member of a user/carer organisation that has funding to do a research project and you want to advertise for researchers to do this job for you. We will look at both of these situations. 1B

3. Being a peer reviewer on a research program
THEME 2: Unit 5 - Part C
As a peer reviewer your job could include one or more of these four things:
Review the proposals to see how good they are and whether or not they need to provide further information or do more work to make the proposal acceptable
Where appropriate, interview the researchers to find out more about the proposal and how they will do the work
Decide on the best proposals and who gets to do the work
Decide how much money they receive
Trainer Notes
PRESENTATION:
Present above points, then say: Let’s focus on what it means to review a proposal. 1C

4. Step 1 in the review process
THEME 2: Unit 5 - Part C
Step 1 in the review process
Gather your own ideas - Read the title or skim through the proposal to get a general idea – notice your thoughts or questions and note them down, for example:
What do you think the proposal is about?
What is the problem or issue they are focusing on? Can you imagine what it is like to live with this problem?
What personal experience do you have of it – what do others say?
What treatments might they consider?
What outcomes would they hope for?
What information do you expect the proposal to provide
What intervention or process are they proposing?
What will that be like for users and carers?
Trainer Notes
PRESENTATION:
When you review proposals your most valuable contribution is your user perspective – you need to keep this at the front of your mind throughout the review.
Present above points, then say: There are more questions but if you start to think about these ones they will get you started.
Note to Trainer: This is based on Oliver (2000) listed as a Source used in this part in the ‘Useful Information’ Section. 1D

5. Step 2 in the review process
THEME 2: Unit 5 - Part C
Step 2 in the review process
Think about the research – Now read the proposal carefully and think about your own experience and expertise – scribble notes on it or another piece of paper. As you read think about things like:
What do you think is good and what do you think is bad? Why?
Are you reacting to the ideas or is it the style of presentation?
Who might want to use the findings of the research? What for?
Is there any bias in the proposal?
Who will benefit from this research? In what way?
Is the language clear? What do you not understand?
Mark words or sentences and ask for clarification
Trainer Notes
PRESENTATION:
Present above points 1E

6. Step 3 in the review process
THEME 2: Unit 5 - Part C
Step 3 in the review process
Order your thoughts – Review what you have thought about and noted down so far. Check that:
All of your questions from Step 1 are answered
If not, identify any suggestions and changes that will help with this
Look at your Step 2 notes - can you separate what you thought about the research from what you thought of the style in which it was presented?
Do your suggestions allow the author to keep what you like and change what you do not like?
If you have been given a checklist to use in reviewing the paper, then read the proposal again and use it now that you have concentrated on your own thoughts.
Trainer Notes
PRESENTATION:
Present above points 1F

7. Step 4 in the review process
THEME 2: Unit 5 - Part C
Step 4 in the review process
Make your comments – Use your feedback form to write down your ideas. Things you need to remember include:
At this point, the research priority topics have already been decided in the ‘consulting about research’ stage – this is not the time to challenge them
Focus on how well the research team plans to answer the question
If you suggest major changes they probably are not practical – the proposal will either get commissioned or not at this stage
Comments may be passed on to the team about the decision:
If they were not successful then these comments explain why they did not get the research
If they are successful these comments may suggest how they can improve their plan further
Trainer Notes
PRESENTATION:
Present above points 1G

8. Step 5 in the review process
THEME 2: Unit 5 - Part C
Step 5 in the review process
Score the proposal – these scores will be decided whether or not the proposal is funded – you need to score from a user perspective. Here is an example of a scoring system:
5 = Excellent: The proposal can be funded as it is
4 = Good: The proposal can be funded with minor changes
3 = Good potential: There is a lot of merit in the proposal, but it needs major revisions or further input/support before funding.
2 = Some merits: There are several weaknesses in the proposal but it is possible to address them.
1 = Poor: Weak proposal
0 = Extremely poor: Proposal cannot be supported
Trainer Notes
PRESENTATION:
Present above points, then say: Hopefully you never receive a proposal that gets a score of 1 or 0, but it is possible. 1H

9. Why is this stage important?
THEME 2: Unit 5 - Part C
User involvement in commissioning research and development is important because:
It is at this point that research and development projects get to go ahead or not
If there are problems with how they are answering the research questions or conducting the research from a user perspective then these must be addressed now
It emphasises that research needs to be of benefit to users and carers, as well as health and social service staff
Trainer Notes
PRESENTATION:
Present above points. 1I

10. THEME 2: Unit 5 - Part C
Case Example – User and carer review of research proposals sent to The Alzheimer’s Society
Purpose:
The Alzheimer’s Society have created a Quality Research in Dementia (QRD) Network to be involved in all aspects of their research work – consulting about, commissioning, monitoring and reviewing research
Here we will concentrate on the commissioning research stage
Trainer Notes
PRESENTATION:
Present above points, then say: The Alzheimer’s Society has their own research grant fund and they use this to commission research that responds to identified priorities for research about either cause, cure or care of dementia. These priorities have been decided by society members through the Quality Research in Dementia Network. It is an active partnership between carers, people with dementia and the research community. The QRD Network was launched in July 1999 with a commitment to make the values of people with dementia and their carers central to the Society’s research programme. 2A

11. Setting up the program
THEME 2: Unit 5 - Part C
The Society canvassed all of its members and invited them to be involved in the QRD Network
Members complete an application form to register their interest to be involved - they sign a ‘volunteer agreement’ to indicate they understand their role as a volunteer and what support they will receive
There are ~ 150 current members of the QRD network who are carers, former carers or patients with dementia, with ages ranging from 23 to 92 years
Members are spread across 13 regions in England, Scotland, Wales and Northern Ireland - there are ~ 15 members per region and one coordinator
Trainer Notes
PRESENTATION:
The Society maintains and supports this network so that they can spread the tasks involved in their research work across a wide number of people to avoid overloading them.
Present above points 2B

12. Roles and activities of the user consultants
THEME 2: Unit 5 - Part C
User consultants who review the proposals:
Are aware of The Society’s research priorities
Agree to read and review research proposals – one member may be sent up to 10 proposals
Think about and decide how important the application is, how good the research strategies are and how it fits with The Society’s research priorities
Provide written comment on the research proposals - this is used to shortlist the proposals according to consumer priorities before they go out to expert peer review
Trainer Notes
PRESENTATION:
There are two groups of user consultants involved. The group who review the proposals at the first stage to create the priorities that go on the short list. They do not have to come to meetings. This is what they do:
Present above points. 2C

13. Roles and activities of the user consultants
THEME 2: Unit 5 - Part C
User consultants who sit on the Grant Review Panel:
Receive and read the:
short-listed applications
consumer reviewer comments
expert reviewer comments
applicants responses to the comments
Hear presentations by the applicants and have opportunities to question the research teams in detail
Discuss the proposal, feedback and interview outcomes with other panel members in depth - make final decisions on which research projects will be commissioned
Trainer Notes
PRESENTATION:
The other group sits on the Grant Review panel that makes the final decisions and they do have to come to meetings.
Present above points. 2D

14. Support provided to user consultants
THEME 2: Unit 5 - Part C
Members of the QRD Network:
receive induction training on their role and tasks
receive written information and guidelines to carry out these tasks
are supported by a contact person, often a staff member from the Society
get personal development opportunities if they are available, such as attendance at a relevant conference
are paid travel expenses when incurred and receipts are provided
are sent a quarterly newsletter to keep them up to date with the activities of the network and the Society’s research work
Trainer Notes
PRESENTATION:
Present above points 2E

15. Level of influence or decision-making
THEME 2: Unit 5 - Part C
User consultants who review proposals have the first opportunity to comment on the proposals and create the short list of proposals that go on to further review
The expert review stage happens after the consumer review and before the decisions are made – their comments inform the final decisions
The Grant Review Panel are made up of half experts and half consumers – all members have equal say about the proposals and an equal vote in the decision making about which ones are commissioned – this is where final decisions are made
Trainer Notes
PRESENTATION:
Present above points 2F

16. Outcomes achieved The Alzheimer’s Society:
THEME 2: Unit 5 - Part C
The Alzheimer’s Society:
has received national awards for it user involvement work
achieves high loyalty and support from QRD Network members - in two years less than ten people dropped out of the network and more than 80 per cent of the network regularly respond to requests and return grant reviews
ensure that all their research work is driven from a user and carer perspective – people will not get funded if they do not show that they understand how important this is
influence priorities in dementia research across the UK even for people who do not seek funding from them, as they take The Society’s research priorities as a start point
Trainer Notes
PRESENTATION:
Present above points. 2G

17. Strategies for success
THEME 2: Unit 5 - Part C
Training user consultants for their role
Making sure user consultants meet and communicate with other users and carers
Following a strict process in the review of research proposals where consumers have the first say on them, and then the last say by making decisions with experts
Having a large enough pool of user consultants so that the work can be spread around and people do not get overloaded
Trainer Notes
PRESENTATION:
Present above points 2H

18. Problems that occur Reading technical language
THEME 2: Unit 5 - Part C
Reading technical language
Research applicants are meant to write lay summaries and put things into easy to understand language, but sometimes this does not always happen
Feeling that they cannot comment on some things
People who review the applications are encouraged to only comment on things they believe they can, or asking questions about the proposal to highlight that there may be some issues with the language and what the researchers mean – a gut reaction with reasons for the reaction is fine to provide
Trainer Notes
PRESENTATION:
Present above points 2I

19. Benefits achieved User consultants believe that:
THEME 2: Unit 5 - Part C
User consultants believe that:
“An extremely valuable contribution from us is to make the scientists stop getting carried away with the complicated problems and ask the simple questions:
‘Why are you doing this? What difference will it make to those suffering the disease and those having to watch others suffer?’”
Making sure that The Society’s research money is spent in a way that their members want and believe is beneficial to people living with dementia and their carers
Trainer Notes
PRESENTATION:
Present above points 2J

20. Thinking about practical issues – what does it mean for you?
THEME 2: Unit 5 - Part C
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

21. Thinking about practical issues – what does it mean for you?
THEME 2: Unit 5 - Part C
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 commissioning research. 3B