Patient & Public Involvement

At the NIHR Day last week Amanda Bates (Research Design Service South East) and Alison Ford (NIHR Evaluation, Trials and Studies Coordinating Centre) gave an overview of why patients and the public should be involved in the design and management of a research project.

Why involve patients and the public?
Whilst it's an integral and necessary part of any NIHR application, involving those who will be affected by the research has considerable benefits, and you shouldn't see it as just a box-ticking exercise. Patient and public involvement (PPI) could provide different perspectives on the research, and demonstrate the relevance of your research to lives of those affected. It may give you privileged access to valuable experience and expertise, and would demonstrate your willingness to be transparent in your research.

So who are they?
Patients or the public could be anyone; we are all fit into this category. It depends on the focus of your research, of course, but could include:

• people who provide unpaid care or support;
• parents or guardians;
• people who use health and social care services;
• people with disabilities;
• members of the public who might be targeted by health promotion, public health or social care;
• groups asking for research because they believe that they have been exposed to potentially harmful substances or products;
• organisations that represent people who use health and social care services.

So how do I involve them?
PPI can happen at any time of the research process, from planning (even right at the beginning, when you're identifying the research topic, through to the prioritisation process or designing the project), to conducting the research, collecting the data, analysing it, reporting and disseminating the findings. In terms of getting external people on board, there are a number of ways of identifying those who might be interested:

• asking patients in clinics, or finding a clinician who will ask for you;
• using 'word of mouth' amongst colleagues; 
• via patient or user groups at local GP practices;
• holding an open event;
• finding local support groups, charities etc;
• via the RDS SE (see below).

You should make sure that they know what is expected of them, and that they are properly reimbursed for their time. You should allow time for positive working relationships to develop, and should ensure that the research environment is physically - and intellectually - accessible. For example, make sure that those with physical disabilities can access meetings, and that you avoid or explain any specific language or jargon.

If you want to explore PPI further, you should get in touch with RDS SE. You can even apply for a small award (£350) that will help with the costs of involving people in the design of a study at an early stage.

Tips on Applying to Two NIHR Schemes

Following on from my last post, I wanted to pass on some tips from Angie Borzychowski (of the Central Commissioning Facility) on making a good application to the Research for Patient Benefit (RfPB) programme, and the Programme Grants for Applied Research.

RfPB awards are for £350k, and the total funding for the programme is £25m pa. They are distributed through 10 regional Advisory Committees, and there are three funding rounds per year. In the South East, this Committee is led by Prof Ann Moore, and last year approved 36 awards from 206 applications, giving a 23% success rate. She suggested that one of the key points for the RfPB was to make sure that you consult and involve others. This includes the crucial input from the Research Design Service (RDS), but also the involvement of patients and the public - more on this in a later post. You should also keep the decision criteria in mind, and make sure that your design is coherent and convincing, explaining the context of your study and how the research will benefit the patients. However, you should also be clear about the specific outcomes for the NHS: it's great that your work will benefit patients, but how are you going to make sure that this actually happens?

Programme Grants for Applied Research are much bigger beasts than RfPB. They have three times as much money to distribute, some £75m pa, and offer grants of up to £2m for up to 5 years. With such large amounts at stake, the NIHR wants to make sure that both the person and project are right. Your profile has to fit: you have to be at the right stage of your career and ready to take on the challenge of these programme grants. However, the research has to be 'right', too: it has to be ambitious, coherent, and important, but also addressing major identified challenges. And, as ever with public funding, you need to demonstrate value for money.

If you're planning to apply to the NIHR contact the RDS, who can provide crucial input to the design of your project and application.

Taming the Hydra: Understanding the NIHR

To many the NIHR can seem like a fearsome hydra: many headed, terrifying and difficult to believe in. However, at an all day event last week this scary dragon was discussed and explained, demystified and domesticated. By the end it felt like a logical, tolerant, well trained hound, acceptable in all the finest (research) establishments.

Ann Deehan (Dept of Health) began by sketching out the shape of the beast. Essentially, it has at its heart patients and the public. These are nestled inside NHS Trusts which are, in turn, supported by universities in gathering information and undertaking research. The NIHR supports this relationship by feeding into it in four ways:

• ‘Faculty’: provides training and fellowship funding;
• ‘Research’: provides funding for projects and institutes;
• ‘Systems’: provides support for processes and procedures;
• ‘Infrastructure’: provides support for networks, centres, facilities and units.

Dawn Biram (Trainees Coordinating Centre – TCC) outlined the work of the NIHR Faculty. NIHR offers a number of fellowships for both clinicians and academics, at all stages of their career. They generally offer a salary for between 3 – 5 years, full tuition fees (for PhD students), research costs, and full support for training and development. If the fellowship is based in the NHS it covers 100% of the costs; if it’s in a university, it’s 80% - in line with the funding offered by the Research Councils.

Angie Borzychowski (Central Commissioning Facility – CFF) and Alison Ford (NIHR Evaluation, Trials and Studies Coordinating Centre – NETSCC) outlined different parts of the NIHR’s Research arm. Alison summed up the difference between the MRC and two of the NIHR’s schemes quite neatly: the MRC funds research to see if a particular intervention is scientifically possible; the Efficacy and MechanismEvaluation Programme (EME) funds research to see if it really does work in practice; and the Health Technology Assessment Programme (HTA) funds research to see if it’s worth it. Can it work; does it work; is it worth it.

Angie, by contrast, looked at funding from the Research for Patient Benefit Scheme (RfPB) and Programme Grants for AppliedResearch (PGAR). These fund projects based in the NHS, but with academic input. They are intended to fund research which will have implications for patients. RfPB funds relatively small scale projects (up to £250k), whereas the PGAR awards are huge: £2m for up to five years. More specific advice on these will be given in later posts, but it’s worth bearing in mind that ‘patient and public involvement’ is crucial, that costs and value for money and examined thoroughly, and that the deadline for submissions will be switching from 5pm to 1pm, so don’t be caught out.

Finally Ian Akers (Comprehensive Local Research Network –CLRN) outlined the work of NIHR Infrastructure. The CLRN grew out of previous, disease-specific networks, such as the National Cancer Research Network (NCRN). It provides help and support for researchers in the NHS, reducing red tape, funding additional people, and advising researchers on how to make their studies work in the NHS. It had had considerable success meeting the particular challenges in Kent and Medway, and had seen a large increase in participation in research over the past four years.

If you want more advice on the NIHR, or help with putting together an application to it, get in touch with the Research Design ServiceSouth East, which is funded by the NIHR to help applicants. Based at the Universities of Kent, Surrey and Sussex, there is help available on your doorstep. 

Understanding and Applying to The National Institute for Health Research (NIHR), 10 May

We will be running an introduction to the National Institute for Health Research (NIHR) on 10 May. Lunch and refreshments will be provided.

A draft programme for the day is given below. You are welcome to come along to the whole day, or drop in for part of it. It will be taking place in the Senate Building at the University of Kent's Canterbury Campus. The event is open to academics at both Kent and Christ Church, as well as clinicians working in the NHS. However, I would appreciate it if you could let me know if you intend to come so that I can get an idea of the numbers attending.

What is the NIHR?

Government funding for health-related research is distributed through two main routes: the Medical Research Council (MRC), and the NIHR. The MRC deals with more fundamental research, the NIHR with research that will affect the NHS, including social care and public health research. Its role is to develop research evidence to support decision making by professionals, policy makers and patients.

Last year it gave out £210.5m of research grants through a range of programmes. This event will be a chance to understand how these differ and fit together, and to hear from those who have had experience of working for or with the NIHR.

Programme

10:00 Registration and Coffee

10:30 Introduction
Prof Peter Jeffries (Director of KentHealth) & Bridget Carpenter (Co-Director Business, NIHR Research Design Service South East)

10:45 Decoding the Acronyms: What is the NIHR?
Moderated by Phil Ward (Research Funding Manager, University of Kent)

An Overview of the NIHR

Ann Deehan (Infrastructure Workforce Senior Lead, Dept of Health)

Central Commissioning Facility (CCF)

Angie Borzychowski (Assistant Director, Research for Patient Benefit)

11:30-11:45 Tea & Coffee

NIHR Evaluation, Trials & Studies Coordinating Centre (NETSCC)
Liz Tremain (Senior Programme Manager, NETSCC)
Trainees Coordinating Centre (TCC)
Dawn Biram (Information & Evaluation Manager, TCC)
Comprehensive Local Research Network (CLRN)
Ian Akers (Portfolio Manager, CLRN Kent & Medway)

12:45 Case Study: Applying for and Managing an NIHR Grant
A ‘warts and all’ experience of an NIHR-funded project by its Principal Investigator

13:15-14:00 Lunch

14:00 Getting Down to Business: Issues to Consider when Applying
Six parallel sessions on preparing a good proposal

Essential Elements
-Patient & Public Involvement
-Governance & Sponsorship

Adding Value
-Strengthening your proposal through health economic evaluation

-Considering statistical issues

15:30-15:45 Tea & Coffee

Framing it Right
-Using the right language
-Calculating costs

16:30 Close & Application Clinic
The formal programme will close at 16:30, but the RDS SE team of research advisors will be available to provide individual advice on proposals. Booking is essential: please contact Annette King if you would like to book a slot.

Research for Patient Benefit Workshop

The Research Design Service (RDS), which provides help and advice on those applying to the NHS, is running another Research for Patient Benefit Funding Workshop.

The workshop will be helpful to those considering developing a research project in an applied health and social care setting and will describe the RfPB funding stream, such as who can apply, what types of research are covered by the scheme, the value of the grant, and the application process itself.

It will be on 29 Sept 2010 starting at 9:30am. Contact Sylvia Francis if you want to take part.