1. Patient and Public Involvement Supporting a future of better research
Isabelle Abbey-Vital, Research Involvement Officer

2. “New and better treatments - in years, not decades”
Ensuring our research programme is shaped by and accountable to people with Parkinson’s
Giving people affected by Parkinson’s the opportunity to have their say in research
Supporting the Parkinson’s research community to work in partnership with patients and carers
We focus on working with people with Parkinson’s to achieve this by:

3. The Research Support Network
Bridges the gap between people affected by Parkinson’s and the research community.
Mobilizes people affected by Parkinson’s to take it further, find out more, participate and also get involved in research.
The Parkinson’s UK Research Support Network (RSN) is an online network of people interested in Parkinson’s research. It’s a way to bridge the gap between people affected by Parkinson’s and the research community. Instead of passively hearing about Parkinson’s research at an event, the RSN mobilises them to take it further, find out more, participate and also get involved in research.
Over 95% of our Research Support Network members are people with Parkinson’s, their carers, family members or friends. With over 1,300 members, our RSN affords us an ideal opportunity to gain opinion, insights, case studies, participants and volunteers as well as help people affected by Parkinson’s to feel in control as their voice is heard by the research community.
We know that almost 60% of our RSN members are interested in taking part in research and 43% joined to be able to work with the research community to help shape Parkinson’s research.
What difference has public involvement made?
The Research Support Network is the only network of its kind focused on Parkinson’s research. It gives us the unique position of accessing both a diverse and rich pool of experience of people affected by Parkinson’s to help us at different stages of the research cycle.

4. Shaping what we do
The RSN is shaped by 4 steering groups of volunteers, that help us to:
Increase awareness and understanding of research
Encourage participation in research
Support Patient and Public Involvement in research
. Aim
The Shared Learning Group on Involvement in Research aims to encourage shared learning about service user and/or carer involvement in research between members. The Group is a sub-group of the Shared Learning Group on Involvement (formerly the User Involvement in Voluntary Organisations Shared Learning Group, and referred to as the main Shared Learning Group in this paper). The Group will offer:
Mutual support
Learning opportunities
The sharing of practice, including policies and procedures
Advice
Discussion on issues that are identified as a priority by members
Recognized there were an abundance of resources out there, particularly the INVOLVE website, but for those very new to involvement we felt this could be confusing – there was a lot there, and we wanted to weed the most important bits out, and those that were most relevant to Parkinson’s research

5. We asked people affected by Parkinson's, carers and health and social care professionals to identify 10 research priority areas for improving everyday life with Parkinson's.
This top 10 is now used to inform, guide and drive future Parkinson's research.

6. Involvement in our grants programme

7. Funding from Parkinson’s UK
We're the Parkinson's charity that drives better care, treatments and quality of life
Together we can bring forward the day when no one fears Parkinson's
We fund research that will achieve this

8. That’s why over the past two years we’ve been working on improving how we support the Parkinson’s research community to do this.
Researchers submit their applications via our online grants managements system
Scientific peers judge the scientific merit of each application
Lay grant reviewer’s review the applications 
Applications are shortlisted based on peer and lay review scores 
Those shortlisted are presented to the Grant Assessment Panels  
Unsuccessful applicants receive feedback  

9. What do you think we ask our Lay grant reviewers to comment on?
We have 100 people affected by Parkinson’s known as Lay grant reviewers, who review all the applications for funding we receive.
Our ‘peer’ reviewers will review the scientific quality, relevance and merit of the application.
What do you think we ask our Lay grant reviewers to comment on?
as they are selected on the basis that they have the appropriate and relevant scientific knowledge to review each particular application.

10. Our Lay grant reviewers comment on..
Importance of the research
Potential benefits of the project
Practicalities of study design
PPI in the research
Communication in lay summary
Anything that could be improved

11. Read the plain English summary of a grant application
Francesca Ferro - Research Grants Officer
Read the plain English summary of a grant application
Is the language used understandable?
Is the purpose of the research clear?
Was the background to the research summarized adequately?
Are the scientific terms and jargon well explained? If not, which terms need explanation?
Our forms ask a range of questions about the application – depending on the topic, this may sometimes be difficult.

12. Francesca Ferro - Research Grants Officer
Lay vs. peer scoring
3 Yes, I strongly support this research and think that it should be funded as a priority
2 This research is worthy of support if funds are available but not as a priority
1 This research should not be funded at this time, but may be suitable for funding if revised and re-reviewed
0 No, this research should not be funded
Our forms ask a range of questions about the application – depending on the topic, this may sometimes be difficult.

13. Our Grant Assessment Panels (GAP1&2) each consist of leading scientists, and health and social care researchers drawn from a wide range of research areas
Since 2002, the charity’s membership has been represented on GAP by Lay Review Co-ordinators who ensure the potential impact of the research to those directly affect by PD is considered
who:.
Ensure the potential impact of the research to those directly affect by PD is considered
After all of the reviews, we send these on to members of our Research Advisory Panel to review the applications, considering both the expert and lay comments received during external review.
This occurs via teleconference
DPMs
RAP meet twice a year to
RAP on website
They are suitably qualified to assess and rate research grant applications on the basis of their scientific excellence, quality and potential to deliver significant results.
These members represent the opinions of those who are living with Parkinson's on a daily basis – other panels – brain bank assessment panel, CDA panel, there are lots of opportunities
Board of Trustees – who are they and what do they do?
GAP makes recommendation of funding to the Chief Executive and sometimes also the Board of Trustees.

14. Supporting Patient and Public Involvement in research
We are working with researchers and people affected by Parkinson’s across the UK to support them to better work in partnership through our Patient and Public Involvement (PPI) programme.

15. Patient and PubIic Involvement
Patient and Public Involvement is when research is carried our ‘with’ or ‘by’ patients rather than ‘to’ or ‘about’ them.

16. Why is PPI important?
At Parkinson’s UK, we want the researchers we fund to work in partnership with people affected by Parkinson’s as much as possible.
The benefits of research that is higher quality, more relevant, and more likely to succeed, are going to be felt by the people who need it most.
And its not just us An increasing number of funders including the Wellcome Trust as well as NIHR and MRC, are asking researchers to improve the way they work with patients and carers in all stages of their research.

17. An increasing number of funders, such as Parkinson’s UK and other charities including the Wellcome Trust as well as NIHR and MRC, are asking researchers to improve the way they work with patients and carers in all stages of their research.
NIHR and Medical Research Council WONT FUND RESEARCH UNLESS IT HAS PPI- PPI is actually a term introduced by the NIHR who make it compulsory for their researchers to include PPI in their grant applications
Why ? Because it make the research better and we only want to fund the best!

18. Involvement
Working in partnership with people affected by Parkinson’s to plan, design, manage, evaluate and disseminate research
Participation Getting patients and carers to take part in research
Engagement
Telling patients and carers about research

19. A researcher is holding an open day and inviting members of the public to attend and hear about the research going on at the university.
There is a feedback box where members of the public can share their thoughts about the talks and the day overall.
Engagement

20. A research group is going to talk at an international patient conference about a new stem cell treatment for Parkinson’s disease.
They meet with group of patients and carers to listen to and comment on the presentation before the conference.
Involvement

21. A researcher sends patients enrolled in a cohort study a link to an online portal that allows the researchers to track and monitor patient symptoms.
Participation

22. Accessing existing groups
One-to-one discussions
Focus groups
Advisory groups
Steering groups
Co–researchers
Research ‘buddies’

23. Parkinson’s UK PPI programme
Aim: To support researchers and people affected by Parkinson’s to actively work in partnership at all stages of research.
We have:
Provided hands-on support to 8
Parkinson’s research groups
Trained 50 PPI volunteers across
the UK

24. Tracking Parkinson’s
Tracking Parkinson's is the world's largest ever in-depth study of people with Parkinson’s
This ambitious 5-year project aims to speed up our search for a cure by finding new biomarkers
More the 3,000 people across 70 hospitals in the UK are participating
Also known as PRO-BAND

25. Tracking Parkinson’s
Donald Grosset met with our PPI volunteers for their thoughts on:
Paperwork and processes
Ethical issues of genetic testing
Data collection methods
Plain English summary
The meeting yesterday is going to make a massive difference (=improvement!) to how we work, as we move forwards with Tracking Parkinson’s. 

26. Tracking Parkinson’s
Increased participant engagement built in to study process and design
Increased study participant choice regarding how questionnaires are completed
Active linkage of study
participants to opportunities
for new research studies and
clinical trials
The meeting yesterday is going to make a massive difference (=improvement!) to how we work, as we move forwards with Tracking Parkinson’s. 

27. Stress & Anxiety in Parkinson’s
Katherine Deane was applying for funding to investigate measuring stress in Parkinson’s.
Online focus group of patients and carers to review the study protocol
Recruited 4 patients and carers to a Lay Advisory Panel

28. Stress & Anxiety in Parkinson’s
Changed the flexibility of appointments for participants
Assured the frequency of blood samples were acceptable
Ensured the patient information sheets were clear and understandable

29. You are a researcher.. Who will you involve?
How many people will you involve?
Will you consult or collaborate?
What method will you use?
What challenges might you face?

30. How do we make PPI meaningful?
We support researchers to:
Involve as early as possible in the research process
Communicate clearly what is needed
Consider the practical issues of living with the condition
Feedback on the impact of involvement
Researchers can approach PPI in a haphazard, rushed and last-minute way, making it less meaningful and valuable to the research.

31. Any questions?

32. Thank you Isabelle Abbey-Vital Research Involvement Officer