How you advertise, choose and induct patient and public involvement (PPI) representatives should be tailored to your target audience. We recommend allowing at least four weeks for advertising and recruitment. The selection process you use may also depend on the method of involvement you choose to use, and your time and capacity.
Explore different involvement methodsMake it as easy as possible for people to complete a survey. If you need people with specific experiences to answer certain questions, you can use filter questions.
Surveys shouldn’t require any kind of training or induction for people to contribute. If you’re looking for feedback on a particular issue or part of your research, you can provide some context in your survey introduction.
Recruitment for interviews and focus groups can be on a ‘first come, first served’ basis depending on your target audience. If you need to pre-screen, use a simple registration form to ask any eligibility questions. We recommend only doing this if necessary, as it can be a barrier to applying.
For interviews and focus groups it’s best practice to provide a pre-read to the people you involve. This gives them enough information to feel confident and able to contribute proactively. It also helps to keep them engaged leading up to your interview or focus group, which will reduce the number of dropouts.
For ongoing or long-term PPI involvement roles, use a recruitment process similar to applying for a job, but less formal. Investing time in recruiting the right people for these roles will help both you and the potential PPI representatives get the most from the involvement activity.
However, remember that people are doing this voluntarily. Try to make the process as easy and accessible as possible. A lengthy and complicated application process will put people off.
An effective advert should be written for a lay audience. Make it engaging and clear, succinctly describing the role, what’s in it for people affected by cancer and members of the public. Also include who you need and why. Be sure to provide contact details so they can ask any questions.
How you advertise will depend on your target audience. Advertising through social media is a quick way to reach people with a succinct, compelling message to grab people’s attention. Advertising through websites and newsletters can be easy and cost effective. These channels have the potential to reach many people but only those who use computers regularly.
If you want to access people who use the computer less often or who have not done PPI before, you might want to use posters or flyers (eg in hospitals, libraries, community centres, etc). You can also advertise your opportunity through a variety of PPI channels online.
Cancer Research UK Involvement Network – contact us to discuss advertising opportunities with our network of people affected by cancer from across the UK
Cancer Research UK Senior Research Nurses – Senior Research Nurses located at Cancer Research UK Centres and Institutes who may be able to help you advertise or direct you to local channels
People in Research – a public website for involvement opportunities in research
Cancer Voices – Macmillan’s patient involvement site
The Scottish Primary Care Research Network – provides advice and links researchers and interested patients and members of the public
Public Health Agency, Northern Ireland – provides training, guidance around recruitment and access to resources
If you’re looking for people affected by cancer or members of the public who are less experienced in PPI, it may better to reach them through local community groups, charities, newspapers or cancer support groups. You can also try GP surgeries, health services and NHS trusts. However, be mindful of sensitivities when doing this.
For ongoing or long-term patient involvement roles, we recommend giving an induction and training at the start of their role. This is the opportunity for you to provide more information about your research and the role of PPI representatives or advisory panel members. It’s also a chance to ask people about their expectations of you and their fellow PPI representatives. This will help to develop a mutual agreement laying out expectations around ways of working together. It will also establish trust.
Plan your induction with the aims of:
explaining what the role requires and how it fits into the wider project
providing context about your research and the structure they will be working in
ensuring everyone is clear about the behaviours expected of them and what they can expect from you in return
building rapport and trust to help everyone feel comfortable
identifying if anyone feels there are any knowledge or skill gaps they would like to work on to help them fulfil their role
Your induction can range in time depending on the role and number of people you are involving. You can hold your induction in person, over the telephone or online. If you’ve only recruited one PPI representative, it’s best to talk to them about how they’d prefer to be inducted and plan something bespoke.
In-person inductions give you and the people you involve the opportunity to start to get to know each other and build trusting relationships. You can also make the day interactive and help people who learn in different ways absorb information better.
Planning for an induction day is very similar to planning for a focus group. Like a focus group, you and the people you involve will get the most from the induction if you thoroughly plan and prepare. Be sure to develop a detailed plan for the day and provide a short pre-read in advance of your induction day. This allows you to drip feed information and keep everyone engaged.
An induction pack is also a useful tool for onboarding. It expands on the information in the role profile and explains about the activities on the day. It can act as a one stop shop for any key information about your research, the role of PPI representatives and any other practical information (eg key contacts, confidentiality or payment information). It can also be helpful to include a glossary of terms that PPI representatives may be exposed to a lot as part of their role, with explanations written for a lay audience.
You can provide this pack as part of the pre-reading to prepare for the day of induction or use the induction day to find out what other information is needed and include it in the pack to provide after.
Pre-reads are a useful tool for most involvement activities.
A good pre-read provides enough information for people to confidently get involved, but not so much that it’s overwhelming. The level of information you need to provide will depend on the topic being explored and your target audience. Make it as easy as possible for people to prepare appropriately.
Include:
instructions on how to prepare for the meeting (eg read the pre-read, book travel, etc.)
where the meeting is taking place or details for joining (if online)
any logistical information like location, directions to the venue and timings for the day so all the key information is in one place
relevant information about accessibility needs
context on your research and what topics will be covered on the day
why you’re involving people affected by cancer and members of the public, and what you hope to achieve (particularly for interviews and focus groups)
any questions you want them to consider while completing their pre-reading (these can be the same questions that you will be asking on the day of your involvement activity)
background information on any topics you want to explore or discuss at the meeting
how you’ll use their feedback and contributions (particularly for interviews and focus groups)
information on the honorarium or payment for contributing to the meeting, and information on how people can claim this
Send pre-reads at least one or two weeks before the meeting and offer to post hard copies. Printing pre-read materials can be expensive and we shouldn’t expect the people you involve to cover these costs.
For ongoing or long-term PPI activities, it’s helpful to get feedback from PPI representatives on the usefulness of the pre-reads and whether there’s anything they’d like to change moving forward.
There’s a lot involved in delivering your activity, including considering how to prepare for and run your activity, as well as how to facilitate active, impactful discussions.
We’ve put together advice, useful templates and case studies to help you when planning, delivering and evaluating your PPI activities.
Writing in plain English or ‘lay’ can help your audience, people affected by cancer, members of the public, or professionals, understand your message exactly as you meant it.
