1. Levels of involvement Consultation Collaboration User control
THEME 2: Unit 5 - Part G
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. What is evaluation?
THEME 2: Unit 5 - Part G
Evaluation is work to explore “the value, merit, worth or significance of the thing in question”
We evaluate all the time
We evaluate research to see if:
the aims of the research have been fulfilled
they have been done well
it helps tell us more about a specific issue
the results are accurate
the results suggest a change in practice/services
Trainer Notes
PRESENTATION:
Examples of evaluation in our daily lives include:
What the weather is like in the morning and what we should wear that day
The best route to take somewhere so you miss the worst traffic or go the most scenic and pleasant way
Which brand of tomato sauce is the best value for money or the most tasty
Users can get involved in evaluating research in a number of ways. They can either become a:
systematic reviewer as part of the Cochrane collaboration,
peer reviewer of systematic reviews, or
review a research topic to decide upon clinical guidelines within their local trust (or nationally with the National Institute for Clinical Excellence, NICE). 1B

3. THEME 2: Unit 5 - Part G
Systematic Reviewer
Identifies a health condition or treatment that needs to be reviewed
Brings a team together of health and social care professionals and users and carers with a knowledge of the condition
Searches for studies (published and unpublished)
Carries out the review - assesses the design, brings the information together and analyses the data
Publishes the review so that many people can read it
An example of this type of systematic reviewer is the Cochrane Collaboration
Trainer Notes
PRESENTATION:
A systematic reviewer is part of a group of people with knowledge and experience of a given topic that looks at the research evidence produced and evaluates and summarizes it.
Present above points 1C

4. Peer Reviewing Systematic Reviews
THEME 2: Unit 5 - Part G
Peer Reviewing Systematic Reviews
Does the review need to be done?
Does the review use appropriate language for the public and healthcare professionals?
Are the team the most appropriate to do it?
Does it consider all people?
Are the outcomes important to users and carers?
Has the reviewer considered potential harm as well as benefits?
Trainer Notes
PRESENTATION:
As well as carrying out systematic reviews the Cochrane Collaboration asks users to peer review systematic reviews and protocols. They send out draft reviews and protocols to people with an interest in the subject. The protocols are written descriptions of how the reviewer plans to carry out the review.
The systematic review group consider the suggestions they receive and sometimes make changes to the review. Peer reviewers are then able to review this again prior to final publication.
The questions that someone doing a peer review of the systematic review might ask include:
Present above points 1D

5. To produce clinical guidelines
THEME 2: Unit 5 - Part G
Can be done locally or nationally
Identifies a health condition or treatment that needs a clinical guideline to help clinicians
Brings a team of health and social service professionals and users and carers together who have knowledge of the condition or its treatment
Searches for studies (published and unpublished)
Reviews the research and make recommendations
Publishes guidelines on the recommended care
Trainer Notes
PRESENTATION:
Research also needs to be evaluated in order that clinical recommendations (guidelines for practitioners) can be made.
This is either done locally within the trust or nationally with the National Institute for Clinical Excellence (NICE).
Within each organisation there is a protocol for how to produce clinical guidelines. It usually has a similar process to a systematic review in that it:
Present above points 1E

6. Opportunities for user involvement in evaluating research
THEME 2: Unit 5 - Part G
Opportunities for user involvement in evaluating research
There are potentially many areas where users can become involved with evaluating research – you could be a:
Member of the Cochrane Collaboration Systematic Review Group
Member of the Cochrane Collaboration Review Group
Member of the NICE Clinical Guidelines Group
Member of a local trust Clinical Guidelines Group
Trainer Notes
PRESENTATION:
Present the above points 1F

7. Why is user involvement in evaluating research important?
THEME 2: Unit 5 - Part G
User involvement in evaluating research and development is important because consumers:
Offer a ‘reality check’
Bring an ‘antidote to jargon and pomposity’
Help make reviews relevant to and readable for everyone, not just healthcare professionals
Raise new questions and topics that are relevant to users and carers
Trainer Notes
PRESENTATION:
Present above points. 1G

8. Example: The Cochrane Collaboration Peer Reviewer
THEME 2: Unit 5 - Part G
Example: The Cochrane Collaboration Peer Reviewer
Purpose of doing peer review:
Assess systematic reviews to ensure the systematic review is:
appropriate
unbiased
carried out thoroughly
has considered user perspective
Trainer Notes
PRESENTATION:
We are going to look at an example of user involvement within evaluating research. First I will present the main points but you also have the description in a handout and that has more detail. After this you will work in two groups – each group will discuss the example. You will decide how good you think the user involvement activity was? You will also see what you can learn that will be useful for your own situation.
The Cochrane Collaboration peer reviewer is part of a team that examines and assesses a systematic review of a specific condition/treatment. The review team aims to:
Present above points. 2A

9. Example: The Cochrane Collaboration Peer Reviewer
THEME 2: Unit 5 - Part G
Example: The Cochrane Collaboration Peer Reviewer
How users get involved:
Identify that a review has not already been carried out in an area that interests them or they think is important
Nominate to join the peer review panel
Attend training in peer reviewing
Trainer Notes
PRESENTATION:
Users usually choose to get involved by volunteering – they may have heard about the Cochrane Collaboration, found them on the Internet or been told about them by health and social service staff.
Present above points. 2B

10. Example: The Cochrane Collaboration Peer Reviewer
THEME 2: Unit 5 - Part G
Support provided to user consultants:
Online training resources to teach users in peer reviewing (Open College)
Join the Cochrane Consumer Network
‘Buddy system’ – this is where you buddy up with another reviewer (user, carer or health and social service staff member) and can talk with them about what you are doing
Trainer Notes
PRESENTATION:
Present above notes 2C

11. Example: The Cochrane Collaboration Peer Reviewer
THEME 2: Unit 5 - Part G
Level of influence or decision-making: This is similar to that of a health or social service staff member who is a peer reviewer
Full member of the review team
Partners in the review process
Give guidance on the user perspective
Trainer Notes
PRESENTATION:
Present above notes 2D

12. Example: The Cochrane Collaboration Peer Reviewer
THEME 2: Unit 5 - Part G
Activities that happen: The team:
Assesses the plan of the review
Identifies and negotiates review tasks that members carry out
Assesses the complete review for:
language
relevance and importance to users
potential benefits and harm
Develops a final version
Trainer Notes
PRESENTATION:
Present above notes 2E

13. Example: The Cochrane Collaboration Peer Reviewer
THEME 2: Unit 5 - Part G
Strategies for success:
online training and support for users (buddy system for mentoring and debriefing)
equal partnership between users and professionals
providing an opportunity to comment on research evidence which is usually only made available to professionals
Trainer Notes
PRESENTATION:
Present above notes 2F

14. Example: The Cochrane Collaboration Peer Reviewer
THEME 2: Unit 5 - Part G
Problems that could occur:
insufficient knowledge of the research process to enable to users’ voices to be heard
insufficient knowledge of user involvement by the professionals
insufficient numbers of users represented on the group
insufficient support and mentoring for users and carers so they can participate as fully as possible
Trainer Notes
PRESENTATION:
Present above notes 2G

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

16. Thinking about practical issues – what does it mean for you?
THEME 2: Unit 5 - Part G
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 evaluating research. 3B