Patient & Public Involvement and Engagement

Patient and Public Involvement (PPI) is also known as Patient and Public Involvement and Engagement (PPIE). This is where patients accessing health and social care services and members of the public give up their time to support researchers and research projects and even become members of groups relating to specific health conditions / treatments. Patients may be those that are currently receiving treatment / care or have accessed treatment and care in the past. Some patients may be taking part in clinical trials too. Members of the public may include relatives or friends of patients / former patients and people that have an interest in certain health and social care related topics / projects.

Advanced Therapies Wales have two PPIE members of our Programme Board who are dedicated to helping us take decisions and develop documents. They played a vital role in ensuring that patient voice was firmly at the centre during the process of developing The Delivery Plan for Advanced Therapies in Wales.

Here’s why they choose to work with us:

‘Patients and the public have an important role in ensuring that the public are engaged and informed about new treatments. They can also help to plan the delivery of a new treatment by the NHS to make sure that it is available equally to all patients who need it throughout Wales. They also have a vital role to play in research from an early stage onwards to test that any new drug or treatment is safe and provides a positive outcome for patients, with manageable side effects. This fulfils the brief of doing research “with the patient rather than for the patient.”

“Patients and public members have a powerful voice to influence the development and delivery of new treatments for Advanced Therapies. They are valuable critical friends offering a wealth of experience, especially lived experiences. Their contributions cast fresh outlooks, to help guide researchers and health care providers to ensure information is communicated in easily understood ways. Respecting inclusivity of patients and members of the public from a wide range of diverse backgrounds, values them and places them at the heart of programme delivery.”

There are many ways that PPI members contribute and some examples of these are;

• Responding to questionnaires
• Taking part in interviews
• Attending focus group meetings
• Becoming members of committees/groups
• Reading through and commenting on documents, for example patient information leaflets
• Attending conferences and events
• Helping to design patient information leaflets, posters, websites.

PPI members work in partnership with researchers, organisations, and groups to help guide them to ensure that information is easy to understand for lay people (people without professional or specialised knowledge of a particular subject).

Patients have a wealth of ‘lived experiences’ as only they know what it’s like being a patient or member of the public having accessed/accessing care and treatments. PPI members are able to have a voice and be listened to and they can offer valuable advice by sharing their lived experiences.

PPI members feel that they have a purpose and gain personal satisfaction by offering their services. Activities they get involved with are beneficial in helping them stay active and they feel that they are giving something back.

It’s a great opportunity to learn about new things and meet people. PPI members can also be paid for their contributions if they wish.

Generally you don’t need any past experience of being a PPI member. It is your own lived experience and interest that matters.

You can find out about other areas of research by visiting the Health & Care Research Wales website.