PPI toolkit content
Patient and public involvement (PPI) can be a rewarding means of supporting and enhancing your research or advocacy activity. However, this may be a departure from conventional approaches.
Researchers should view PPI as a means of increasing the impact, quality and relevance of their studies. Some of the benefits include:
- New partnerships between researchers and patients
- Inclusion of an important perspective to research and advocacy activities
- Mutual empowerment between all stakeholders
- Providing greater outcomes for patients
- Fulfilment of requirements for funding requests
In this section, you will appreciate how PPI differs from other activities and learn how to successfully incorporate and embrace PPI in your work.
- Involvement, Engagement and Participation
- Starting your activity
- Implementing your activity
- Completing your activity
There can be confusion around what the difference is between involvement, engagement and participation. The fact is that they are three distinct initiatives. It is important to know what each activity entails to ensure you adopt the correct practice for your research or advocacy activity.
What is involvement?
Patient (and public) involvement (PPI) is most commonly defined as research which is carried out either ‘with’ or ‘by’ members of the public (including patients), rather than ‘to’, ‘about’ or ‘for’ them. This term is commonly used to define PPI and was developed by the INVOLVE group, a National Advisory Group within the NHS (UK).
In practice, this is a bi-directional initiative where researchers and patients (and members of the public) work together to inform, influence and guide research and advocacy activities. With PPI, communication flows in both directions and each stakeholder’s opinion is of equal value.
Researchers, patients and members of the public all contribute to and influence research and development.
There are many examples of PPI including:
- Focus Groups: Patients/public working alongside researchers to discuss and shape research and advocacy activities, such as defining research priorities, outlining the research methodology, evaluating study results and planning results dissemination.
- Reviewing Research Documentation: Patients/public can review and give feedback on many different information documents from initial proposals, through to study methodology, results and dissemination materials.
What is engagement?
Engagement describes activities where researchers connect with patient or public audiences to share or describe their research. Whilst this activity may prompt some dialogue between patients or members of the public and researchers, this does not influence or shape the research activity.
The researcher is the only stakeholder to contribute to the activity.
There are many examples of engagement including:
- Speaking to patients/public at conferences or meetings
- Researchers conducting radio/television/other media interviews about research
- Providing laboratory tours to patients/members of the public
What is participation?
Participation describes activities where patients take part in research. They do not influence the research but are themselves a part of the research. It’s often regarded as an activity where a patient or member of the public consents to take part.
Only researchers will contribute to the activity.
There are many examples of participation including:
- Participants in a clinical trial
- Participants of a survey (where the survey forms part of the results and does not guide the research study)
- Participants in interviews
It’s important to plan how PPI will help inform your research before you begin. To avoid recognition as a token activity, your plans should incorporate meaningful PPI in as many areas of your work as possible. You should consider how you will work alongside PPI contributors in achieving the objectives of your study. Here are some key suggestions:
- Embed – Don’t Add PPI. It’s important to embed PPI in as many areas as possible, taking funding and resources into consideration, to avoid recognition as a token-activity.
- Communication. Effective and regular communication with PPI contributors before, during and after the activity is one of the most important considerations for your work.
- Respect. It’s imperative to respect the opinions of the PPI contributors – which may include positive and negative feedback. This can be a feature of natural debate and discussion and when respectfully managed, can contribute to more balanced research.
- Accessibility. Patients and members of the public may have particular accessibility requirements, so you should determine roles and ways of communication which will suit those who you wish to work with.
- Diversity. Having diversity (examples may include age, gender, condition, location) in the perspectives received from PPI contributors will offer balance, inclusivity and more closely capture the opinions of the audience you are trying to support through your research.
- Safeguards. Supporting your PPI contributors throughout this experience will be important, so it is essential to include appropriate safeguards and emotional supports.
- Confidentiality. It may be necessary to consider the sensitivity of the information which is shared amongst the group and have plans in place to ensure information is handled in a manner compliant with General Data Protection Regulation (GDPR) regulations.
- Funding. You may require resources and funding to support your PPI activity. As such, it is important to include costs for PPI in funding requests and allocate resources appropriately.
- Governance. Researchers should adhere to good research and clinical practice principles when working alongside patients/public.
- The Irish Platform for Patient Organisations, Science and Industry (IPPOSI) have developed a patient charter for involvement.
- The INVOLVE Group in the UK have developed a set of standards for public involvement.
Effective project planning allows for informed decisions to be made about your activity and how best to conduct it. Planning how you embed PPI in your research will allow you to determine the roles of your PPI contributors and how you will work together to achieve your aims.
- The first thing to identify is where it is appropriate to embed PPI in your research. This should be in as many areas of your research activity as possible.
- You need to determine an appropriate time-frame to conduct PPI. This should allow enough time for PPI contributors to be recruited, contribute and offer feedback.
- Determine if the PPI initiative will require funding to support and sustain the activity. This should be factored into any budgets for research projects and should incorporate costs to facilitate communication, contribution and administrative support.
- You need to determine the roles you need to carry out the tasks for your initiative and how many PPI contributors you wish to include. It is important to note that administration, time and costs may increase with an increase in the number of PPI contributors.
- Consider designating a PPI contact that is not associated with the PPI activity to act as an independent project liaison and provide impartial advice, troubleshooting or recommendations based on positive or negative feedback from all members of the team.
- You will need to determine a collaborative strategy for communication between the research team and the PPI contributors. Planning to incorporate communication before, during and after the PPI initiative with PPI contributors will demonstrate a more meaningful approach to the activity.
- You should consider what safeguards or emotional supports you need in place to protect PPI contributors and researchers in this initiative.
There are many useful guides and resources available to help you plan PPI activities. Please visit the ‘PPI in Research – Useful Resources’ for further information. Alternatively, please contact the Research department on 01 678 9004 or firstname.lastname@example.org.
Identifying roles for your PPI contributors
PPI contributors can influence many aspects of research and development activities – from the setting of research priorities right through to the dissemination of study results. As such, their experiences can be shared through a number of important roles, either in an advisory or a more active capacity. It is important to remember that these roles may require varying levels of expertise. Examples of roles include:
- Identifying/Prioritising Areas of Research Interest
- Actively Contributing to Steering Groups
- Acting as a Co-Applicant on a Research Study
- Designing Research Activity
- Developing/Reviewing/Deciding on Funding Applications
- Conducting Research
- Overseeing/Managing/Advising Research
- Assessing/Monitoring/Prioritising Results
- Advising on/Proofing Research Communications
- Sharing Research/Putting Research into Practice
Budgeting for your activity
Depending on the PPI activity, you may require some funding to support the work that you undertake. This funding should cover administrative resources, materials and time required to facilitate communications and any reasonable expenses incurred by PPI contributors to participate in the PPI activity. However, such decisions are often made based on current regulation and preference of the research group.
Facilitating effective communication
Effective collaboration commands effective communication. PPI enables bi-directional communication between PPI contributor and researcher. It is important to ensure open and honest dialogue to enable perspectives to be heard and respected. It is essential that communication is facilitated before, during and after a PPI initiative has taken place. This demonstrates a commitment to conducting the research effectively but also heightens the value and respect of the PPI contributor’s input.
When communicating with PPI contributors, it is important to make sure that documentation you provide is easy for them to understand, that it avoids unnecessary jargon and is easily accessible to every PPI contributor. Adopting Plain English in your writing is critical to facilitating effective communication.
Monitoring your PPI activity
As with any project, it is important to regularly monitor the PPI initiative to ensure that it continues to progress according to the assigned timeframe and budget. Regular monitoring also provides an opportunity to seek out any areas which could be enhanced and detect (and correct) issues as swiftly as possible.
When your PPI initiative has completed and the involvement of your PPI contributors has come to an end, what happens next?
The impact of a PPI contributor’s involvement will often last longer than their role. As such, researchers should communicate with PPI contributors after their involvement has ended, to highlight progress with the study, but also any further impact of their involvement. It will demonstrate respect for the PPI contributor and indicate how valued their role has been to the study.
It is important to review your PPI activity against your planned objectives. Similarly, researchers should obtain feedback on the PPI initiative from PPI contributors, to identify areas where the activity excelled and areas for improvement.