Patient Participation Involvement and Experience (PPIE)
Patient Participation Involvement and Experience (PPIE) – an essential part of the NightLife study
Patient involvement is essential to research and a key aspect to the NightLife study. This is because patients, carers and the public have contributed to the design and development of the NightLife study from the very outset.
We formally describe this involvement as ‘PPIE’ which stands for ‘Patient Participation Involvement and Experience’. PPIE contribution differs from participation in the actual research study. This is because the purpose of PPIE is to gain insight and feedback about an aspect of the study from the perspective of the patient, carer, relative/close friend or public. For example, in the NightLife study, we may seek advice from the PPIE group regarding potential concerns or issues from a patient and carer perspective about the set-up of an overnight dialysis service. By working with a PPIE group throughout the NightLife study, we will ensure the study remains focused on issues that matter to patients and the public.
Contribution to the PPIE group is voluntary and is open to individuals with kidney failure, their carers, close friends and relatives, and members of the public. Prior experience is not needed; we welcome the opinions and thoughts of those who have and have not previously participated in research. We will arrange meetings with the PPIE group at different time points throughout the NightLife study through virtual calls and telephone calls. Ongoing discussion can take place through e-mail, Twitter, and our Facebook page and private group, so PPIE group members do not need to wait for a PPIE event to express their views or raise topics for conversation. When COVID-19 restrictions allow, we will also have the option of face-to-face meetings with travel reimbursement.
Frequency of participation is completely optional and participants can join the PPIE group at any point throughout the NightLife study. Also, contribution can be in addition to or completely separate from participation in the NightLife study – this means you do not need to participate in the actual study to contribute to the PPIE work.
Patients and the public have been involved in the concept, scope and design of NightLife study from the very beginning. We are delighted to be working closely with Madeleine Warren (@queenofdialysis) and Nick Palmer (@nick_fire1), both well-known kidney patient advocates with extensive experience of living with kidney disease and haemodialysis.
Our PPIE work is led by Katherine Hull, Victoria Cluley and Niamh Quann. We are eager to hear about your experiences, thoughts and opinions – please contact us if you’re interested in contributing to the PPIE group.
Our first virtual PPIE event took place on Friday 30th April 2021. The purpose of the first event was to introduce the NightLife study and to gain your views about the study and the role of PPIE.
Going forward we will hold regular virtual PPIE drop-ins around different topics, including 'behind the scenes' talks from expert topics identified by PPIE members themselves.
Please get in contact for further information and if you are interested in participating. We look forward to hearing from you!
PPIE Group Testimonials
"The role of patients in kidney research is paramount in making sure research is done with patient benefit in mind. Patient involvement is very powerful as personal stories can be absorbed on a different level to what a professional may present, as they may not have lived through certain experiences... One such study which may hopefully help in this regard is NightLife... It's great to feel part of something that could potentially be life-changing for the betterment of patients, now and in the future, when more results and in-depth data are available." - Fez, PPIE member
"I was chatting to a friend about nocturnal dialysis and how fantastic is it and how it really changed my life... I was seriously interested in joining the project so I could share my nocturnal home haemodialysis treatment with others. I attended my first meeting and was hooked on helping and sharing my experience for others to consider night-time dialysis." Hilary, PPIE member
"As soon as I came to know [about the NightLife PPIE group], I just thought straight away, yes, I want to take part, I want to make people aware [of nocturnal dialysis]. The NHS and renal units are doing so much, and I should also be part of it. Without patient participation, we cannot do anything." - Harish, PPIE member