Case Study: Professor Sue Ziebland

Prof Sue ZieblandDirector, Health Experiences Group, Nuffield Department of Primary Care Health Services, University of Oxford

“A lot of research is funded by public money, so it’s a no-brainer that the public should be involved in defining it. It’s important for science, it’s important for public understanding and ethically it’s important. Patient and public involvement helps make research better.”

NIHR Senior Investigator Sue Ziebland is a medical sociologist who specialises in qualitative narrative interview methods. Her research and interviews with service users provide the content for Healthtalkonline, a website offering information about health issues. She therefore uses patient and public involvement (PPI) as a means of generating effective public engagement tools.

Professor Ziebland has involved patients and members of the public in her research for many years and believes it has had positive impacts. When recruiting a researcher to carry out interviews with people with schizophrenia, having a service user on the panel was an effective way to identify the candidate with a demonstrable ability to build rapport with that specific participant group. On the steering group for a study on the ethical dilemmas of carers of people with dementia, three carers contributed to every stage, from designing interview tools to helping researchers interpret the results. They were engaged, enthusiastic, supportive and challenging, offering a fresh perspective and views on the presentation of findings which the researchers had not anticipated. The project led to a Healthtalkonline module about caring for dementia which was honest and upfront about carers’ positive and negative experiences.

In other projects, patients’ connections and insights into community dynamics have helped Professor Ziebland and her team involve so-called ‘seldom heard’ groups and recruit them to studies. This has included taking advice on how and where to communicate appropriately, including with people who are unable to read. Through PPI they have gained access to Irish travellers and have worked with young men, including those from black and minority ethnic communities, both groups which researchers often struggle to include in health research.

Professor Ziebland notes that patient and public involvement brings the authority of experience but that people will only feel confident expressing that if their contribution is clearly valued by the research team. This requires researchers to be explicit about the purpose of a PPI activity, the specific requirements of a task and the role of each individual in relation to the wider research programme.

Supporting patients to be involved is important and may need to include offering training or mentoring – either formally or informally. Researchers should also plan for illness and absence when working with patients and not rely on sole individuals. Professor Ziebland takes a reflective approach to PPI and considers it to be a continual learning process. She suggests that researchers who are new to PPI may find it helpful to visit the Healthtalkonline PPI module in which patients talk about being involved in research. A module describing researchers’ experiences of PPI will follow in 2015.

Professor Ziebland believes that patient and public involvement enhances public knowledge of research and makes people more favourably disposed towards it and to incorporating findings into their lives. More widely, it contributes to public understanding of science and enhances people’s ability to interpret headlines about research findings.

“It’s important to communicate to patients that they are there because we recognise that they can do something which we can’t do. If you’re involving them in the right way, you ought to be surprised by the things they can contribute.”


Healthtalkonline
http://www.healthtalkonline.org

Carers of people with dementia module
http://www.healthtalkonline.org/peoples-experiences/nerves-brain/carers-people-dementia/topics

Patient and Public Involvement experiences module
http://healthtalkonline.org/peoples-experiences/medical-research

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