Patient involvement in research: top tips

The guide below offers practical advice for researchers who want to involve patients and members of the public in their research projects.

Planning patient and public involvement

  • Consider all stages of your research - from how you can involve patients in the initial stages to the ongoing support to be offered to patients and the public. 
     
  • Consider what your expectations are for patients and the public, i.e. the stages of the project that they will be involved and how.
     
  • Choose the most appropriate method that corresponds to your research aims and objectives/
     
  • Clarify the roles of patients and carers to be involved. Be clear about the requirements as well as the experience, skills and attributes that they will need to have.
     
  • Identify time, resources and support needed and available; i.e. expenses, incentives and rewards, expenses for meetings, etc.  
     
  • Create a background information document, that clearly spells out your expectations of patients and public to be involved, purpose and intended impact of involvement.

Advertising to patients and the public

  • Be clear about who you want to target.
     
  • Use the most appropriate media channels for the target audience.
     
  • Consider using a variety of methods of communications i.e. emails, flyers, posters, websites, social media, local media, national and local voluntary and other organisations.
     
  • Ask PPI/E leads, colleagues and existing patient representatives for advice and support.

Selecting patient and public representatives

  • Develop a selection process appropriate to the role, this may be formal or informal.
     
  • If you have selection criteria, i.e. experience, skills, attributes, shortlist against these criteria.
     
  • If you are using a formal process, i.e. application process and interview, the panel should include the person who would be working with the patients and the public. The process should resemble the process for recruiting a member of staff.
     
  • Be clear that you recruit based on the patient/carer role and selection criteria and are not considering other criteria, such as professional background.

Appointing patient and public representatives

  • Confirm appointments and selection; some people may reject the offer.
     
  • Confirm the basic ‘terms and conditions’ for involvement.
     
  • If the role is formal and/or long-term, i.e. appointment in a committee, board or panel, provide them with a written confirmation.
     
  • Ask for feedback and be prepared to provide feedback.

Supporting patient and public representatives

  • Provide all new patient and public representatives with some core introductory information. For example, a welcome pack of information about the organisation/clinic/research area, key contacts, their role, useful resources and so on. 
     
  • Hold an induction meeting or event, i.e. an informal group workshop or a formal induction event.
     
  • Recognise that people will have different needs. Ensure that there is time and space for people to identify and express their own needs.
     
  • Ensure that briefings and feedback are available after involvement and engagement activities, events and meetings.
     
  • For involvement in meetings, groups, panels and committees, ensure that support from the chair / lead / coordinator is offered before, during and after the meeting or event.  
     
  • Ensure that other support is available, i.e. mentorship or buddying, dedicated member of staff responsible for PPI, and training. Training can be internal and external.
     
  • Make sure that practical arrangements are in place all the time, i.e. expenses processes and payments (parking, travel, payment for care), incentives (payment, vouchers, other rewards), accessibility arrangements, refreshments and sandwiches for meetings.    
     
  • Provide feedback throughout the course of the project.

Ending the collaboration

  • If representatives decide to stop being involved, their term of office comes to an end or they are involved for one-off or short term projects:
     
    • Acknowledge and celebrate the participant's contribution and thank them. 
       
    • Encourage people to stay in touch. With their permission, develop a pool or contacts you can access for future involvement opportunities.
       
  • If a longer-term project comes to an end:
     
    • Repeat the steps above.
       
    • Provide feedback about their contribution and involvement.
       
    • Celebrate their involvement with a celebratory event or a token of appreciation.

 

NIHR INVOLVE provides further information and top tips on how to recruit and involve patients in your research.

Contact us

Dr Markella Boudioni - Patient and Public Involvement and Engagement Lead at The Royal Marsden NHS Foundation Trust

General enquiries - [email protected]