Practical support
There are various guidances and helpful websites that can provide practical support in planning and executing your involvement and engagement activities. Your local PPI lead is your first point of contact and will be able to support you further. This webpage provides tips for payments, recruitment of public contributors, language used, targeted audiences, accessibility and science-art collaborations.
Payments for patient and public involvement
It is best practice to reimburse reasonable travel costs of patient contributors and offer them an ‘involvement’ fee. Fees are ‘honorarium’ payments, and are a form of recognition offered for contributions made to each activity, and not an hourly rate. This does not mean that contributors have a contract of employment with your department or organisation. The fee should cover the preparation for, attendance at meetings, and any post-activity feedback
The NIHR payment guidance includes support to calculate the overall costs for patient and public involvement when budgeting your grant application. In addition to budgeting costs for holding the involvement activity, it is important to also budget for time your local PPI team will spend on supporting your project’s involvement. The School developed a payment guidance for its funded researchers.
It can occur that public contributors are on benefits and unsure how contributions for their involvement work might affect their benefits. The NIHR payment guidance includes a lot of advice for public contributors on benefits, including a service for personal advice managed by the NIHR Centre for Engagement and Dissemination and Citizens Advice Bedford. The service provides public contributors for NIHR funded projects confidential advice on how payments for their involvement would work for their specific circumstances.
Read SPCR PPI Payment Statement
Finding public contributors
Your local PPI coordinator might have access to a database of people interested in being involved in primary care research. You can also consult your current or past public contributors whether they have people or organisations in their network who might be interested to become involved in your research.
In addition, there are several websites that support recruitment of public contributors:
- http://www.peopleinresearch.org
- https://www.voice-global.org/
- https://generationr.org.uk/ (involvement groups of children and young people)
Some charities run their own involvement groups of people with patient and/ or carer experience from the relevant condition. You can partner with the charities to work with their involvement groups.
You can also build relationships with local community groups to involve them in your research. Social media, such as Twitter and Facebook, can be used to reach out to local community or patient/ carer groups.
There are also large organisations who have local groups that might be interested to be involved in your research:
Language
When communicating with public contributors it is important to use appropriate language. Avoid jargon and ‘buzzwords’ relevant to your organisation that an outsider might not understand out of context. Many words are too general and vague and could lead to misinterpretation by the public contributor. Ensure you are also careful with metaphors as they might not be understood by everyone.Think about the audience you are writing for and, especially when writing for a wider public audience, keep the average reading and education age in mind. Some good practice can be found in this guide.
Be open and specific in your communication. There are various online guides to support you in writing plain English.
Keep your audience in mind when communicating. Ensure that your text is accessible, for example use guidance to make your communications easy to read for people with dyslexia if you want to involve them in your research.
Interacting with specific audiences
It is important to identify your audience when planning your involvement. There are several guidances available to work with certain audiences:
- Children and young people
- People living with dementia
- Diverse and inclusive involvement
- Black and Asian and minority ethnic groups
- The deaf community
- The Lesbian, gay, bisexual plus (LGB+) community
- The Gypsy Roma Travellers community
- People with learning disabilities
To learn what others are doing, listen to this recorded conference session "diversity and inclusion in health services research" from Health Services Research UK conference 2020. The NIHR has also developed a video covering patient and public advice on ethnic diversity in research.
Accessibility of event
When organising any activity, keep the accessibility for your public in mind. Patients might have several conditions and some disabilities are invisible, though would still require adjustments to your activity.
Shape Arts have developed an overview of questions to answer when you are organising an event. Go through the questions when planning your event and ensure that you are able to provide an answer to those that might be relevant for your activity. Gov.uk has also published a blog with tips on organising accessible events and presentations.
When using colour to emphisize certain elements in your work,ensure that they can still be read by those with colour blindness. More information on the types of colour blindeness can be found here, including a helpful colour palette.
You might also consider to make dyslexia friendly versions of any written documents and articles. Guidance on how to write dyslexia friendly can be found here.
Science - art collaborations
Especially within public engagement, you could consider working with an artist to make your research accessible, provide alternative ways of visualising your outcomes and reach new audiences. The NCCPE has published a "best practice guidance when working with artists on public engagement projects" and THIS Institute published "Arts-based engagement: a guide for community groups, artists and researchers". There are also blogs and various examples and inspiration can be found on Twitter when looking for #sciart.