Going public – the how and why of PPI

Tell us why PPI is so important for prevention and early detection research…

I think the critical factor in delivering research in those areas is making the research is relevant to people affected by cancer, and that the proposals being considered are those that patients and the public would understand, support and participate in. Crucially in this field of research, this includes members of the public who may have no experience of cancer. This can only happen if people are involved from the outset in a meaningful way and the proposal and any activities required are described in language that the lay person can easily understand.

Without that it is far less likely that patients/public will participate and feel good about their experience. That research needs to be designed for and with people seems a fairly simple ask. The mantra should always be “Nothing about them without them”.

What role do you and the Patient and Public Review Panel have when CRUK is making funding decisions in prevention and early detection?

The Panel is made up of a diverse group of individuals who have all had experience of or an interest in cancer, prevention and early detection research. We review every application that goes to the Prevention and Population Research Committee and the Early Detection and Diagnosis Research Committee. The views of the Panel are then incorporated alongside the views of the scientific review panels and presented in one document to the Committee members. The two co-chairs of the PPI Panel, Lisa Townsend and I, attend those Committee meetings to represent the PPI Panel and we are given the same voting rights as all other committee members. This means that the scientific and PPI elements are considered equally when the applications are scored.

What do the members of the Panel consider when giving their review?

Panel members build their views around several key areas:

• Is the proposal relevant to the public, is it a proposal that we think is important and will make a difference to outcomes.
• Is it supported by a meaningful Patient and Public Involvement Plan, supported by an appropriate budget for PPI.
• Are the right people involved. If the cancer has a disproportionate impact on a part of the community then we would expect them to be involved. Also, if the delivery of a test or referral process involves primary care practitioners then are they being consulted.
• The quality of the Lay Summary. The lay summary has to be written in a way that someone with no medical background or insight into cancer could understand. This means it has to be designed for the average reading age in the UK (9-11 years old) and without the use of jargon or complex language. This is the main route ‘in’ to the application by the Panel so where it is overly complicated then it is very difficult for the PPI Panel to make an assessment. The lay summary should describe the ‘what’, ‘why’, ‘how’ and ‘to what end’.

What is the problem or challenge that is being addressed.

Why is it important, what is the scale of the impact on the public.

How will this research be carried out, what does it involve and how will participants be supported.

To what end: this is the ‘so what’ question. If successful, how will the proposal change outcomes for patients or be incorporated into systems in a way that will make a difference.

What are some common downfalls you often encounter when reviewing applications?

We often see applications where there hasn’t been enough – or indeed any – conversation with people affected by cancer. This is obvious because the proposal isn’t presented in a way that emphasises the difference it will make for them.

Another downfall is when the PPI plan isn’t a plan at all (see below for how to avoid that) and the lay summary is impenetrable for the lay reader.

From the perspective of the Panel, what distinguishes a strong, meaningful PPI plan to one that feels tokenistic or theoretical?

The main point is that it has to be an actual plan. Often, we see a narrative of what PPI is or a set of ambitions, rather than a description of what PPI representatives will do, when and how. Designing a plan helps the research team to demonstrate that PPI reps are being utilised effectively.

PPI should have been part of the early discussion and, alongside the creation of the lay summary, they should be involved in designing and endorsing the PPI plan.

Having a PPI co-applicant who will oversee and seek assurance around PPI processes is helpful and reduces the possibility of PPI being tokenistic.

The diversity, characteristics and number of people involved should also be considered in meetings or focus groups to ensure that the patient and public voice is not lost alongside the scientific.

Alongside all expenses being covered, those involved with PPI activity should be offered an honorarium to recognise their contribution and this should be described and costed in the overall budget, which CRUK provides guidance on. Each element should be broken down rather than a single budget line that covers travel expenses, catering and honorarium payment.

If there is independent PPI oversight then wherever possible the people selected should have lived experience of the condition being considered and/or experience of the PPI process.

Training should be offered where required and this should be both for PPI participants and those working to support them.

Alongside PPI co-applicants or those providing oversight, there should be a wider group of PPI people who will contribute throughout. They should be representative of those most likely to be affected by the condition and should be diverse enough to provide a range of insights and experiences. This can be augmented through focus groups. At all stages accessibility and support arrangements should be in place.

Patient support charities can add significant value and are often able to advocate on behalf of a wider group or connect researchers with people affected by cancer.

PPI should be a central part of considering progress and the communication of milestones and results with the public. We would expect there to be regular interaction points as the research progresses.

It is helpful if consideration is given to maintaining a record which captures when and how PPI input has led to any changes or reconsideration in the research focus or plan.

I joined the ACED PPIE Panel hoping to improve diagnosis time. For me it was three years from first primary care visit to diagnosis, resulting in more long-term damage, and poorer quality of life.

ACED intends to improve this. In the next five years, with five new workstreams, ACED is positioned to improve outcomes for cancer patients by providing faster and more accurate diagnosis.

The PPIE role within ACED is expanding: in our first few years, the PPIE input was modest. With the experience and talent within the PPIE Panel, I knew we could offer more. This will be seen over the next 5 years, where PPIE will be at all levels of ACED.

Each individual workstream will have its own PPIE champion, who will be the link between the workstream and the PPIE panel. People affected by cancer will have input at all levels of research – from the design of trials to the dissemination of results. PPIE members may be actively involved in research, as co-investigators. The Chair of the PPIE Panel (me!) will now have a vote on the Executive Board.

We will also audit the PPIE groups at each of the ACED centres, to learn from their approach, and ascertain how we can work together. All of this activity will require training and mentoring. This increased activity will be closely monitored and evaluated, to measure the impact of our involvement, and the Board has allocated a generous annual budget to meet this challenge.

As a global organisation, this offers the opportunity to provide a gold standard for PPIE activity, demonstrating the many areas within research that can benefit from patient and public involvement. We want to capture the benefits to research that PPIE can bring, to encourage other organisations to take this approach. When I challenged the Board to expand PPIE activity last year, I never imagined this plan – with many far-reaching changes – would be fully agreed and the early stages already in place at the start of our next quinquennial. We are on an exciting journey together.