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:
In this section, you will appreciate how PPI differs from other activities and learn how to successfully incorporate and embrace PPI in your work.
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.
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:
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:
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:
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:
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.
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 research@fightingblindness.ie.
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:
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.
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.
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.