1. Levels of involvement Consultation Collaboration User control
THEME 2: Unit 5 - Part F
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. Disseminating research
THEME 2: Unit 5 - Part F
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
Trainer Notes
PRESENTATION:
Present above points 1B

3. Methods for disseminating research
THEME 2: Unit 5 - Part F
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
Trainer Notes
PRESENTATION:
There are as many ways of disseminating research as there are ways of communicating with each other
Present above points, then say: Users, carers and the public who have had some involvement can be involved in this. 1C

4. Methods for disseminating research
THEME 2: Unit 5 - Part F
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
Trainer Notes
PRESENTATION:
There are also more imaginative ways that can make the research and its outcomes easier to read or understand or share.
Present above points, then say: It is important to write the outcomes in a range of formats that are easy to read and understand for the group you are trying to reach. 1D

5. Who is the audience? It can include:
THEME 2: Unit 5 - Part F
It can include:
health and social service 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
Trainer Notes
PRESENTATION:
How you decide to disseminate the research and development outcomes will depend on who you think the audience is. The audience for research outcomes includes many groups of people.
Present above points, then say: You need to work out the audience depending on what the research and development project was about and which people or groups you believe will be affected by it. You need to put the information in a form that they can use. For example, you may need to translate it into other languages, use large print or communication systems like Braille. 1E

6. Levels of involvement
THEME 2: Unit 5 - Part F
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 service 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
Trainer Notes
PRESENTATION:
Present above points. 1F

7. Levels of involvement Other ways are examples of collaboration:
THEME 2: Unit 5 - Part F
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 service staff researcher
co-designing posters
co-developing drama performances – possibly also being involved in performing them
Trainer Notes
PRESENTATION:
Present above points, then say: It is also important to remember that these things do not just have to happen at the end of the project. It is a good idea to create and distribute short progress reports to people who participate and others that you know are interested in the outcomes.
The other important thing to remember is that although user involvement in research and development means opportunities in all stages of a project, you do not HAVE to do all parts – only the parts that you are comfortable with. Some people are more interested in being on the project steering group, others want to do the research activities while others prefer to do the writing up and disseminating part.
Learning to write up research takes some time so although it might feel scary now, with some practice it will become easier and more comfortable. 1G

8. Levels of involvement
THEME 2: Unit 5 - Part F
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
Trainer Notes
PRESENTATION:
Present above points., then say: One more important thing – make sure that everyone involved in a project knows about the results before it goes to the media – this is especially important if the outcomes personally affect participants and their families. 1H

9. Why is this stage important?
THEME 2: Unit 5 - Part F
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 service 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 service 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
Trainer Notes
PRESENTATION:
Present above points. 1I

10. Example 1 – The Mental Health Foundation: Strategies for Living project
THEME 2: Unit 5 - Part F
Strategies for Living began in 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
Trainer Notes
PRESENTATION:
All of the examples I will present are included in your Case Examples section for this part of Unit 5.
The area of health and social services that has done the most work on user-led research where user consultants have strong roles in the disseminating stage is the mental health sector, so most of the examples come from their work. The first one is from The Mental Health Foundation who has funded the Strategies for Living project. This has become a nationwide project stretching over 6 years, beginning in 1997.
Present above points, then say: Here is one of the projects. 2A

11. Example 1: Strategies for Living – The ‘ups and downs’ of bipolar carers
THEME 2: Unit 5 - Part F
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
Trainer Notes
PRESENTATION:
Present above points – make sure you explain what bi-polar disorder is in case people do not know.
She did the project over 12 months and gained consistent support from a Strategies for Living project staff member in every stage of it. For example, they helped with the analysis by reviewing Lesley’s work and provided feedback on the report drafts. Although there were many challenges in doing the work, she found the whole experience rewarding and stimulating. We will have a look at her report after presenting all the case examples.
Note to Trainer: Make sure that you print off a copy of her report as an example for the rest of this Activity Option – the link is in the Case Example section of the Trainer and Participant versions of Part F, with the specific link to her report listed in the ‘Sources used for the material in this part’ of the Useful Information section 2B

12. Example 2 – The Alzheimer’s Society: Quality Research in Dementia Network
THEME 2: Unit 5 - Part F
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 fund or are funding and why
summaries of completed research projects
a list of all current projects
progress reports on some of the current projects
Trainer Notes
PRESENTATION:
The next is a good example of user involvement, but in a different way. The Alzheimer’s Society 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 they fund. The Society draws on the network to identify the topics that should be researched, develop priorities for them and then offers opportunities for researchers to submit proposals. User consultants play a strong role in commissioning the projects. The Society then plays a role in disseminating the research that they fund so that it reaches members of the QRD Network as well as general members of The Society
Present above points.
Note to Trainer: Make sure that you print off a copy of one of the bumper research issues as an example for the rest of this Activity Option – the link is in the Case Example section of the Trainer and Participant versions of Part F. 2C

13. Example 3 – SURE: Service User Research Network
THEME 2: Unit 5 - Part F
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
Trainer Notes
PRESENTATION:
Things are a little different again in this example from SURE, the Service User Research Network. Established in 2001, SURE is a collaborative project between service user researchers and clinical academics aiming to involve service users in all aspects of research. It is located in the Health Services Research Department at the Institute of Psychiatry in London.
Present above points,
Note to Trainer: Make sure that you print off three of these progress reports as an example for the rest of this Activity Option– the link is in the Case Example section of the Trainer and Participant versions of Part F. 2D

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

15. Thinking about practical issues – what does it mean for you?
THEME 2: Unit 5 - Part F
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 disseminating research. 3B