Patient and public involvement in research

Beryl

Female
Age at interview: 64

Brief outline: Beryl has been a PPI volunteer for two years. Her involvement started when her daughter had cancer and she became her carer. She is now part of a voluntary group developing patient information materials for clinical research.

Background: Beryl was an NHS manager for nineteen years. She is divorced and has two children. Ethnic background/ nationality: White English.

Audio & video

Beryl is now retired but worked for 19 years as an NHS manager, so she has been used to working with clinicians. After her daughter was diagnosed with cancer, Beryl attended a cancer conference in Liverpool. She met representatives there from a hospital in London and decided to volunteer as a PPI representative in research. In 2012 Beryl was also diagnosed with cancer and her role changed from caring for her daughter to becoming a patient herself. 

Beryl has been involved with research for two years, and she is in regular contact with cancer researchers from the NHS Trust she works with. One of her responsibilities is to read their applications for research funding and to help make the technical language more understandable. She gives the researchers a summary of her thoughts and recommendations on one side of A4. 

Beryl’s main reason for getting involved in research comes from her experience of caring for her daughter. She sees one of her roles as being that of a patient’s advocate and she would “love to do something with PPI… for patients now and patients of the future” to enable them to give their perspective on health care provision. Beryl believes we are all patients at some time in our lives. She thinks patients should be treated with honesty and courtesy by health professionals, and that their views should be incorporated into research and care.  

Until recently, Beryl’s group wasn’t informed about the outcomes of the research papers they reviewed. They asked for this information and now know how many studies went on to be funded and what difference the research made. This is very important to Beryl because she believes research should be done with patients in mind and should have a positive impact on their lives. 

Beryl fears that some researchers consider the involvement of patients and members of the public in research as a “tick box exercise”. She firmly believes that if research directly involves patients then their involvement must be made a condition of funding. 

As well as being a PPI representative in research, Beryl would also like to be a lay member of a GP group. She heard about one that was looking for representatives, but was put off volunteering when she found she was required her to submit her CV. She thought this was unnecessary for someone who was volunteering their free time. 

When Beryl worked in the NHS she had a mantra for doctors who lacked what she believes are the basic people skills needed for a good doctor-patient relationship. “I used to say, ‘Talk to the patients, don’t talk about them. Talk to them’”. 

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