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

“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:

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.

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

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.

Involvement in our grants programme

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

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  

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.

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

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.

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.

Our Grant Assessment Panels (GAP1&2) each consist of 30-40 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.

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.

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

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.

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!

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

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

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

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

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

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

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

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. 

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. 

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

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

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?

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.

Any questions?

Thank you Isabelle Abbey-Vital Research Involvement Officer iabbey-vital@parkinsons.org.uk www.parkinsons.org.uk/research