1. The Programme Nicola Cotter & Lucy McCloughan
Background to the research study
How we came to PPI
How we recruited and trained our PPI members
How we involved Chest Heart and Stroke Scotland
How we ran our PPI groups
How our research benefitted from PPI
What could have worked better

2. Feasibility study for a trial of blood pressure telemonitoring for people who have had stroke/ transient ischaemic attack (TIA)

3. What was the study about?
Participants check blood pressure once a week
They will be asked to phone their nurse if their readings are high
Their nurse will phone them if they are worried about anything
Monthly feedback

4. We are expected to involve the public as a condition of our funding

5. We are expected to involve the public as a condition of our ethical approval

6. How Stroke Voices benefitted our research study

7. What approach did we use?
a researcher-led approach involving consultation with patients in one or more elements of research development
a joint collaborative approach involving patients and professionals occupying equal but different roles in all aspects of project work
a patient/service user-led approach to research design and implementation.
INVOLVE describes 3 modes of engagement
Different views were held within the research team on the merits and disadvantages of each approach and their applicability within the context of the research project.
It was decided that patient involvement would take a consultative approach given that the design of the trial had been determined within the Telescot programme framework.

8. How did we engage patients?
inclusion of patients in structures which include the salaried workers on the project.
separate “advisory” groups where patients meet outwith the main research structures.
Some members of the research
team had concerns that patients would find
participation in a trial management group
involving clinician–researchers, daunting and
off-putting. Patient engagement with the
complexity of subject matter discussed at such
meetings, and the appropriateness of such
content, was also raised as an issue.
This was considered a less disruptive way of instigating patient involvement given that the management structures underpinning the trial had been firmly established within the wider research programme.
VOCAL (Voice of Carers Across Lothian) suggested a ‘scrutiny panel’.
A small, arm’s length group of 4-6 representative stakeholders to meet to review and give advice on aspects of research development.
The advisory group approach was used as it provided patients with the opportunity to advise and offer input outwith the constraints, pressures or influences of trial management group structures.

9. How did we recruit and train patients?
CHSS helped us put together a user group
4 members were trained by CHSS and the research team
over 2 days
included trial methodology, ethics and governance issues.

10. COSMIC
VOICES

11. VOICES

12. Chest, Heart & Stroke Scotland
Stroke Voices
A patient/carer involvement training package, applicable to all patients with experience of stroke.
This will empower their voices in the development of stroke services across Scotland.
Chest, Heart & Stroke Scotland

13. Stroke Voices Workshops
Courses run over three days
10.30am pm
Course tailored for people who
have difficulties after their stroke
The managed clinical network here are very keen for you to be involved in their work and to help you they would like you to come on the Stroke Voices training first.
The training will run in October over three short days with rest days
in-between. Sorry about clock time not being quite correct!
There are many many different affects of stroke. So we will invited you to give us an idea of how your stroke has effected you before the course so that materials can be adapted for you and your needs can be met on the course.
The group will be a small one so that we can support you.
Chest, Heart & Stroke Scotland

14. Chest, Heart & Stroke Scotland
What did we do?
Day 1
Introduction to Telescot
Exploring
benefits & barriers of NHS user involvement.
Understanding effects of Stroke
On first day we will introduce you to the concept of being a user representative in the NHS.
We will also to the concept of representing others views – know as a representative user.
We follow on with looking at the benefits to all of user involvement.
We go onto look at the what are the difficulties that you may encounter to user involvement or the barriers
Chest, Heart & Stroke Scotland

15. Chest, Heart & Stroke Scotland
Day 2
Telescot Study & Equipment
Concerns about working with NHS staff
What makes effective involvement
What issues the Research Team need to consider
Day 2
We will cover the structure of the NHS to give you an overall view of the organisation you are working with and show you national organisations that are seeking your views too.
In the next sessions we will look at what both your concerns are about working with user representatives and what they might worry about when they work with you.
On this second day we ask you decide on one issue that you might have concerning that you would like to work
Chest, Heart & Stroke Scotland

16. Chest, Heart & Stroke Scotland
Day 3
General skills for meetings.
How to prepare an issue to present to health professionals
Research Study Panel
On Day 3
You can here what the local health professional need you r views on and how to get involved, by s, questionnaires, focus group consultations or on any of the committees needing your views.
We then give you some ideas on good communication generally and lastly help you with how to do your homework in presenting the issue you have decided to work on – this is know as Making a Case for Change.
All your issues from the course are feed back to the Lanarkshire Managed Clinical Network team who will consider them in the appropriate arenas.
Chest, Heart & Stroke Scotland

17. What else CHSS has to offer...
Training & Education for Professionals

18. How did the group work?
Met 4 times in accessible locations over 1 year.
Four panel members and 2 or 3 research team members attended
We organised transport for all participants
We provided lunch for all participants
We kept the meetings short
We focussed on one area which we wanted feedback on
We used facilitation techniques to elicit feedback
We sometimes contacted members between meetings to get rapid feedback on issues
We still occasionally request feedback on new funding proposals
We invite our panel members to open feedback sessions.

19. Research benefited in three key ways:
Informing patient communication
Giving views on the usability of the intervention
Guiding the development of the qualitative study

20. Patient Communication
Helping design the trial’s printed materials: changing the presentation and layout, reducing the use of jargon and technical language, and reducing the density of information.
Discussing the pros and cons of different ways of communicating with people affected by stroke, e.g. using the telephone, the importance of a clear and patient approach to verbal communication
Helping (with CHSS), to develop accessible patient information materials, the selection of pictures and simple diagrams used to illustrate central messages, and in reviewing the use of language and design in the revised leaflets.
Suggesting the best ways to communicate with potential participants to ensure they had received and understood their invitation packs.

21. Technology and the trial intervention
Describing the difficulties people affected by stroke may have in fitting the cuff due to hemiparesis
Describing the impact of impaired vision on seeing readings taken by the equipment
Describing how physical disabilities resulting from stroke affecting ability to use mobile phones used in the trial

22. Development of qualitative work
carer involvement
patient interaction with mobile phone technology
the acceptability of the website for trial participants.
suggesting additional interview questions on
Providing insights and comments on the interpretation of the data. This was then used to develop the coding framework.
Helping with data analysis by reviewing anonymized data extracts to illustrate key themes and by

23. What might we do differently?
Not started early enough on to influence the main purpose of the research

24. What might we do differently?
Staff work or costs of patient involvement in patient involvement was not costed into the original research application

25. Concluding Comments
Very different views about the value of patient participation amongst the research team
It took time, and careful discussions to reach consensus on a way forward
It yielded really positive benefits for the research study
We would start much earlier in the research process

27. Acknowledgements The four people who worked on the patient panel
Peter Fairbrother who did all of the work!
Chest Heart and Stroke Scotland
Our project funders