HealthTalk: People Who Have Been Involved in Research

Stephen

Case Study: Stephen – young campaigner

Stephen became well known for his bucket list wish to raise £1 million for a cancer charity. At the time of writing he had raised over £4.3 million, and had been a PPI (Patient and Public Involvement) representative and a member of a teenage and young adult clinical studies group for about nine months. He was particularly interested in cancer research since he was diagnosed with colorectal cancer when he was 15. Sadly Stephen passed away in May 2014. As a PPI rep, Stephen reviewed participant information sheets, research proposals and helped researchers devise the questions they should ask in interviews or on questionnaires. He saw his role as offering a patient perspective and tailored advice on research. He thought including PPI can lead to research becoming “more efficient, more accurate and more reliable”. For more details and videos of Stephen, see Stephen’s story on HealthTalk.org.

BerylCase Study: Beryl – carer

Beryl was an NIHS manager for 19 years. Her involvement with medical research started when her daughter had cancer and she became her carer. She became part of a voluntary group developing patient information materials for clinical research. In 2012 Beryl was also diagnosed with cancer and her role changed from caring for her daughter to becoming a patient herself. 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. For more details and videos of Beryl, see Beryl’s story on HealthTalk.org.

MaxineCase Study: Maxine – long-term involvement

Maxine has been involved in PPI in health research for more than 15 years. 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. Maxine has vitiligo and has spent many years researching the condition for personal reasons. 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. 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. Maxine’s work in vitiligo was acknowledged when she was awarded an MBE for the advancement of knowledge and research in vitiligo. For more details and videos of Maxine, see Maxine’s story on HealthTalk.org.

BenCase Study: Ben – healthy volunteer

Ben initially became involved in health research as a participant. He got chatting to a research nurse at a birthday party he took his son to and she invited him to take part in a clinical trial as a healthy volunteer. The trial was about asthma, and Ben’s participation involved being weighed and measured, giving a blood sample, having his blood pressure measured, doing some lung function tests and having a bronchoscopy. He was then invited to become a recruitment officer for the trial and a PPI representative. Ben reviewed the pre-trial information pack to assess and make recommendations to improve its readability. He also attended a PPI workshop run by a large cancer charity. At the workshop they discussed how best to involve patients and members of the public in research, and what barriers they might meet along the way. One of the key recommendations they made to the charity was to encourage researchers to speak in lay language, and reject jargon and acronyms. For more details and videos of Ben, see Ben’s story on HealthTalk.org.

There are lots more videos on HealthTalk.org, where patients and members of the public share their personal stories about taking part in research.

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