Patient and public involvement in research

Helen

Female
Age at interview: 41

Brief outline: Helen started doing PPI about eight years ago. She provides a lay perspective in health and medical research as well as in improving service delivery for patients.

Background: Helen lives with her partner. She previously worked as an educational researcher, but recently began working as a Patient Experience Project Lead within the NHS. Ethnic background: White British.

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Helen started to become interested in health research after she and her partner were involved in a car accident. The hospital where she was treated had a section on its website about research and she emailed them to say she was interested in getting involved. Initially they sent her some things to read, but after that she didn’t hear from them again. Later, Helen was diagnosed with multiple sclerosis (MS) and decided to participate in clinical trials as a way of making sense of her condition and finding treatment. She also began to think about PPI again and realised how little encouragement there seemed to be to really engage people in research. She was also fascinated by how information about research is communicated to patients and wanted to ensure it was precise enough for people to be able to give informed consent. She contacted the hospital again to remind them she was interested in PPI and they put her in touch with a group that was conducting research about GP practices, which she joined as a lay member. She has been involved in numerous studies since then, reviewing information sheets and study protocols. 

As she has been doing PPI for about eight years, Helen is starting to feel like she might be losing her lay perspective. She thinks this is because she doesn’t have to question clinicians and researchers because she is used to the language they use. She thinks that it is important to keep experienced patients involved in PPI and said there should be other roles for them to move onto when they have been involved for a while. However, she worries that researchers might choose to consult only experienced patients and so some important perspectives could be neglected. 

Helen thinks PPI is a way of grounding research and opening it up to new ideas. She thinks it is important that researchers give feedback to people about the difference their input made. She enjoys doing PPI and said it scratched “an intellectual itch” for her. She is also pleased to know that her work might make things easier for patients. PPI takes up a lot of her time and her partner finds it difficult to understand why she does so much voluntary work. She would encourage others to do PPI because it’s a worthwhile thing to do and has decided not to apply for any more voluntary PPI positions in order to give others the opportunity to get involved. 

Since Helen was interviewed, she found a new job working as a Patient Experience Project Lead within the NHS. She hopes to learn a lot more about how to get the patient’s voice heard by the NHS and acted on where possible.

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