1. Levels of involvement Consultation Collaboration User control
THEME 2: Unit 5 - Part E
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. Managing research process
THEME 2: Unit 5 - Part E
Managing research process
Project
Board
Research proposal
Research and Development
Department submission
Peer Review
Trainer Notes
PRESENTATION:
Talk through this model
Ethics Committee submission
Approval 1B

3. Project Board/Review and Reference Group - RRG
THEME 2: Unit 5 - Part E
Project Board/Review and Reference Group - RRG
This board or group is a number of health and social services professionals (and lay members) with experience and knowledge of the research topic and methodology
They are usually set up prior to submitting a research project for peer review
Their role is to support the project until its completion and dissemination
Trainer Notes
PRESENTATION:
Present above points 1C

4. Purpose of the Project board/RRG
THEME 2: Unit 5 - Part E
Purpose of the Project board/RRG
Monitor, support and guidance
Develop and comment on the design and methods used
Ensure timing and budget are adhered to
Develop a strategy to ensure the results are disseminated and findings put into practice
Trainer Notes
PRESENTATION:
Present above points 1D

5. Research and Development (R&D) Department
THEME 2: Unit 5 - Part E
Research and Development (R&D) Department
Most trusts/organisations have a Research and Development (R&D) department that is responsible for the overall management of all research undertaken in their organisation
Their role is to:
ensure the scientific quality of a research project
ensure the organisation has the resources and suitable expertise to undertake the research
most importantly, ensure its patients are adequately protected
Trainer Notes
PRESENTATION:
Present above points, then say: Each research active organisation should have a policy document to give guidance to investigators on the registering, review and approval of projects. All projects need to be registered with the organisation’s R&D Department. Once registered the review process will begin. An important step is peer review by an experienced researcher or someone experienced in the research topic. 1E

6. Peer Review At peer review the project is assessed on the:
THEME 2: Unit 5 - Part E
At peer review the project is assessed on the:
Skill and experience of the project team
Adequacy of timing and resources
Sufficient supporting evidence for the project
Aims and objectives clear and appropriate
Research questions fulfil the aims
Appropriate numbers to fulfil the aims
Appropriate methods to fulfil the aims
Trainer Notes
PRESENTATION:
Present above points, then say: Once the proposal has been fully reviewed and they are satisfied that the project can be undertaken by the organisation, the R&D department will approve the project to go ahead. 1F

7. Research Ethics Committee
THEME 2: Unit 5 - Part E
Research Ethics Committee
NHS ethics committees provide independent advice to participants, researchers, funders, sponsors, employer, care organisations and professionals about issues of quality and safety in the research proposal
They are governed and supported by the department of Health and local Health Authority
Each committee consists of up to 18 members - at least one third are lay members
Each committee has a broad range of ages, diversity, experience and expertise - scientific, clinical and research
Trainer Notes
PRESENTATION:
Present above points, then say: The committee members have a number of responsibilities within their role:
completing an application form and standard application process
attending initial and continuing training regarding research ethics, research governance and research methodology
attending at least two thirds of all scheduled committee meetings
maintaining confidentiality throughout the review process 1G

8. Purpose of the Ethics Committee
THEME 2: Unit 5 - Part E
Purpose of the Ethics Committee
The primary purpose of the ethics committee is to:
protect the dignity, rights, safety and well-being of participants and concerned communities
take into account the interests, needs and safety of researchers, but this is secondary to participants
ensure the burden and benefits of research are fairly distributed across all classes and groups within society (age, gender, economic status, culture and ethnicity)
Trainer Notes
PRESENTATION:
Present above points 1H

9. The Ethics Committee Review
THEME 2: Unit 5 - Part E
The Ethics Committee Review
Ethics committees assess the project for:
Scientific design and conduct
Recruitment of participants
Protection of participants
Community considerations
They are also responsible for agreeing any changes to the research protocol at any stage throughout the project
Trainer Notes
PRESENTATION:
Present above points, using the following information:
Scientific design and conduct- appropriate design in relation to the objectives and potential for reaching sound conclusions; justification and awareness of possible risks weighted against the anticipated benefits of the project and adequacy of the research site and service provision
Recruitment of participants- appropriate population and inclusions/exclusions
Protection of participants- the safety of any treatment, the suitability of the investigator, the informed consent process, the physical and psychosocial support mechanisms, confidentiality procedures.
Community considerations- the impact and relevance on the concerned community, the steps taken to consult the community during the course of the design and the dissemination strategy 1I

10. Opportunities for user involvement in managing research
THEME 2: Unit 5 - Part E
There are potentially several areas where users can become involved with managing research:
Member of a project board/RRG
Peer Reviewer for new projects
Member of an ethics committee
Trainer Notes
PRESENTATION:
Present above points 1J

11. Why is the managing research stage important?
THEME 2: Unit 5 - Part E
User involvement in managing research and development is important because having users and carers involved can:
change the focus, design and content of a study
raise new research questions that professionals may not know or think about
ensure interventions and outcomes are kept ‘user-friendly’
encourage stronger commitment to dissemination of the project
Trainer Notes
PRESENTATION:
Present above points, then say: As there may be increased costs and time involved, this must be considered when creating user involvement opportunities in managing research. 1K

12. THEME 2: Unit 5 - Part E
Example 1: The needs of Pakistani and Bangladeshi communities in Newcastle
Purpose: The Primary Care Group in Newcastle wanted to find out more about the needs of their Pakistani and Bangladeshi communities so they:
understood how they described emotional distress from a cultural perspective
knew what support they would need to deal with distress
could use the findings to improve local services
Trainer Notes
PRESENTATION:
This is an example of a research project where user consultants were involved in managing as well as doing the research.
Present above points. 2A

13. Setting up the project:
THEME 2: Unit 5 - Part E
Example 1: The needs of Pakistani and Bangladeshi communities in Newcastle
Setting up the project:
Pakistani and Bangladeshi community members were invited to join the project team through community advertisements
Seventeen people submitted applications and were interviewed
Thirteen were employed and joined the project team as paid Community Project Workers (CPWs)
Trainer Notes
PRESENTATION:
Present above points. 2B

14. THEME 2: Unit 5 - Part E
Example 1: The needs of Pakistani and Bangladeshi communities in Newcastle
Roles of the user consultants: After training, they co-designed the project under the supervision of experienced service managers and researchers and:
developed the interview guides and interview process
advised on cultural matters
used their community networks to gain participants for the interviews who then encourage others to participate
did the interviews
analysed the information with a researcher
shared outcomes with community members/organisations
Trainer Notes
PRESENTATION:
Present above notes 2C

15. Support provided to user consultants:
Example 1: The needs of Pakistani and Bangladeshi communities in Newcastle
THEME 2: Unit 5 - Part E
Support provided to user consultants:
Went through a 6 month training period – 6 hrs/week – the training was accredited through the National Open College
Were supervised by experienced service managers and researchers on a regular basis
Were paid project members on a part-time basis – able to work flexible hours
Trainer Notes
PRESENTATION:
Present above notes 2D

16. Example 1: The needs of Pakistani and Bangladeshi communities in Newcastle
THEME 2: Unit 5 - Part E
Level of influence or decision-making: The CPWs were paid members of the project team and had strong influence on all aspects of the project design. They:
were the main decision-makers about what questions to ask, how to ask them and how to run the interviews
were partners in the project analysis
guided the researcher in understanding what was said and why in the interviews
reviewed and confirmed the final descriptions of what the information meant about community members’ experiences and changes in services
Trainer Notes
PRESENTATION:
Present above notes 2E

17. Example 1: The needs of Pakistani and Bangladeshi communities in Newcastle
THEME 2: Unit 5 - Part E
Activities that happened:
Discussions about why services needed to be improved for these community members
Initial training period
Designed how to gain the information
Did 104 interviews with community members
Analysed information gained in interviews
Shared information with different primary care groups, other local services and community members through regular meetings and formal presentations
Trainer Notes
PRESENTATION:
Present above notes 2F

18. Example 1: The needs of Pakistani and Bangladeshi communities in Newcastle
THEME 2: Unit 5 - Part E
Outcomes achieved: The project led to these outcomes:
found out how mental health services were working for local ethnic minority groups
better location of support workers where community members could reach/visit them
brought in and trained more counsellors from Asian backgrounds to offer more culturally appropriate services
worked on a way to address racism in the local area
Trainer Notes
PRESENTATION:
Present above notes 2G

19. Example 1: The needs of Pakistani and Bangladeshi communities in Newcastle
THEME 2: Unit 5 - Part E
Strategies for success: The main strategies were:
recruiting people directly from the community who understood how to involve community members
listening to their cultural advice with respect and building this into all parts of the project
providing extensive training and then doing a test run to help build the CPWs’ confidence
providing ongoing supervision for CPWs to help with any problems that occurred
communicating the outcomes back to the community so they know what had happened to their input
Trainer Notes
PRESENTATION:
Present above notes 2H

20. Example 1: The needs of Pakistani and Bangladeshi communities in Newcastle
THEME 2: Unit 5 - Part E
Problems that occurred:
Staff wanted to ask personal details that CPWs said community members would not give
Staff learned to balance information they expected they could ask with what was culturally sensitive
If not they would lose valuable information because people would not participate or speak in detail
There was tension between staff supervising the CPWs and senior staff about how quickly the project should happen
Senior staff realised they were so familiar with wider health service issues that they forgot they were working with people who knew little about this - they needed to be more patient
Trainer Notes
PRESENTATION:
Present above notes 2I

21. Example 1: The needs of Pakistani and Bangladeshi communities in Newcastle
THEME 2: Unit 5 - Part E
Benefits achieved:
employed workers from Asian backgrounds in a community with a high unemployment rate
got good participation from a mostly non-English speaking disadvantaged population who had low literacy levels
gained in depth information because the process was appropriate to the group
had solid information they could use to make service changes
learned about different views of what emotional distress is and how people show it – this will reduce misunderstanding between staff and community members
Trainer Notes
PRESENTATION:
Present above notes 2J

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

23. Thinking about practical issues – what does it mean for you?
THEME 2: Unit 5 - Part E
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 managing research. 3B