Researchers' experiences of patient & public involvement

Marian

Female
Age at interview: 46

Brief outline: Marian is a research professor in public health. She conducts research into pregnancy complications. She has been involving patients and members of the public in her research for 10 years.

Background: Marian is married with three children. Ethnic background: White British.

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Marian conducts research about pregnancy complications. She described this as a controversial subject when it comes to involvement and difficult because she involves parents who either have had very sick babies or who have lost their babies. As well as involving parents, she has involved representatives from voluntary organisations working with women who've had pregnancy complications. But she said the meetings have been most useful when the women themselves were in the room. 

For Marian, involvement has two main purposes – to ensure research is relevant to people, and is designed in a way that will encourage people to participate. She also believes it plays an important role in getting evidence into practice by patients and members of the public sharing it with their networks and patient groups, perhaps using social media. 

Ultimately, she is responsible for ensuring her research is conducted properly, so she weighs up the pros and cons of suggestions made by her involvement groups before deciding what's best. Sometimes this involves changing the research slightly, whilst ensuring its quality isn't affected. She felt it was equally important to explain her decisions to her involvement groups and said that communication was an important skill for researchers to have. Being good at chairing involvement meetings is also important, but Marian said she'd prefer a member of the public to do this, although, in her experience, when this happens, she often ends up chairing from the side. 

Marian believes people who are involved should have their costs reimbursed. She was concerned that payment might lead to people who were involved becoming professionalised, but recognised that people may have to take time off work to get involved in research and that this was a problem that needed to be addressed. She suggested that raising awareness of involvement with employers might convince them to allow people to take unpaid leave. This might also create more diversity in who gets involved. 

The research Marian does can be stressful because she works with people who've had very traumatic experiences. She has children, but worries about her junior researchers who haven't yet. She has organised sessions for them run by organisations specialising in bereavement to help them think about their emotions and how best to cope. The people she's involved have said they benefit from the support they get from being with a group of people who've had similar experiences, and this made her wonder about the emotional implications of involving only one or two people.   

The benefits of involvement outweigh its challenges, so Marian intends to continue involving people in her work. She encouraged people to get involved in research saying, 'Don't underestimate what you know and what we don't know... We're not the experts in what really matters and that's what we need to know from people'. She described involvement as ‘incredibly energising' and said has got a lot of ideas for research by involving women who speak from their own person experience.

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