Patient and public involvement in research

Maxine

Female
Age at interview: 72

Brief outline: Maxine has been involved in PPI in health research for about 15 years. She has been involved in various aspects of PPI, including a Cochrane review on vitiligo on which she is the lead author.

Background: Maxine is a retired academic librarian. She is married with two children, aged 48 and 42, and has two grandchildren. Ethnic background: Jamaican/British.

Audio & video

Over the last 15 years, Maxine has been involved in numerous aspects of patient and public involvement. Her involvement began when the Partners Council of the National Institute of Clinical Excellence (NICE) was being set up and it was recommended she get involved as an independent individual patient member. This was partly due to her interest in research, but also because she had worked as an academic librarian. Being involved in this was amazing for Maxine because she felt she was doing something positive and contributing as a patient. She always felt like an integral and important part of the Council. 

Maxine has vitiligo and has spent many years researching the condition for personal reasons. She used to get excited about the research studies she came across, but realised that they weren’t all of good quality. Since becoming involved in PPI, she has taken part in many aspects of research, including seeking funding, priority setting through the James Lind Alliance and lead authoring a Cochrane review on vitiligo, which she is in the process of updating for the second time to include new research. Through her PPI experience and the training she received to conduct the Cochrane review, she has become better at judging the quality of research and deciding which studies have produced worthwhile information. She said this is not easy for patients and members of the public to do because the media is often misleading in their portrayal of research findings. 

PPI gives researchers another perspective that may challenge their own, but Maxine believes it will improve research because it is based on the opinions of patients, the people researchers aim to help. She thinks PPI should be valued because it is unique to the UK and she would like to see it being better publicised so that ordinary people realise how they can contribute. 

Over the years, Maxine and her husband have experienced several health conditions. Her work in PPI has been a positive distraction during this time. She enjoys what she does, especially discussing research with clinicians and researchers. Her work in vitiligo was acknowledged when she was awarded an MBE for the advancement of knowledge and research in vitiligo.

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