{"id":3453,"date":"2024-09-27T11:13:55","date_gmt":"2024-09-27T10:13:55","guid":{"rendered":"https:\/\/cancerprevention.qmul.ac.uk\/?p=3453"},"modified":"2024-09-27T11:13:55","modified_gmt":"2024-09-27T10:13:55","slug":"we-are-there-to-represent-people-similar-to-ourselves-the-experiences-of-being-experts-by-lived-experience-in-the-person-centred-cancer-screening-peccs-study","status":"publish","type":"post","link":"https:\/\/cancerprevention.qmul.ac.uk\/index.php\/2024\/09\/27\/we-are-there-to-represent-people-similar-to-ourselves-the-experiences-of-being-experts-by-lived-experience-in-the-person-centred-cancer-screening-peccs-study\/","title":{"rendered":"\u201cWe are there to represent people similar to ourselves\u201d \u2013 the experiences of being experts by lived experience in the Person Centred Cancer Screening (PECCS) study"},"content":{"rendered":"\n

This blog was written by: Karen Manton, Simon Milner, Jill Barker, Kate Sykes<\/em>:<\/p>\n\n\n\n

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Karen:<\/strong> I have been a Mental Health Advocate for several years. I began sharing my lived experience with the students at Teesside University almost three years ago as I am passionate about helping others.<\/p>\n\n\n\n

I was involved in the PECCS study as an \u2018expert by lived experience\u2019.<\/strong><\/p>\n<\/div><\/div>\n\n\n\n

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Simon: <\/strong>I live in Botton Village. I work as a paid life of opportunity reviewer and help improve support for people living in our communities. I also work as a volunteer in the Botton cafe and farm. <\/p>\n\n\n\n

I was also involved in the PECCS study as an \u2018expert by lived experience\u2019.<\/strong><\/p>\n<\/div><\/div>\n\n\n\n

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Jill: <\/strong>I am co-lead for this study with Kate. I am a mental health practitioner and academic. I am keen to ensure that health services are accessible to everyone, ensuring those who experience health inequalities are provided with relevant reasonable adjustments to support them.<\/p>\n<\/div><\/div>\n\n\n\n

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Kate: <\/strong>I am co-lead for this study with Jill. I am a researcher and lecturer. I want to make healthcare services accessible to people, who would normally struggle to. My email is kate.sykes@northumbria.ac.uk<\/a> if you want to ask questions about the study.<\/p>\n<\/div><\/div>\n\n\n\n

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About the study<\/strong><\/h2>\n\n\n\n

This blog is based on the experiences of two experts by lived experiences, Karen and Simon, who were involved in the Person Centred Cancer Screening (PECCS) study<\/a>. A summary of the study (which is now finished) is below:<\/p>\n\n\n\n

Aim of the study: <\/h3>\n\n\n\n

To find out what influences the decisions of people with severe mental illness and people with learning disabilities to take part in cancer screening programmes.<\/p>\n\n\n\n

Summary of study: <\/h3>\n\n\n\n

1) We completed a systematic review<\/a> to look at what is already known about the barriers and facilitators to people with severe mental illness in completing cervical, breast and colorectal screening; <\/p>\n\n\n\n

2) We then did interviews with people with Bipolar Disorder. This was because there was not a lot of information in the systematic review from people with Bipolar Disorder about completing screening, and; <\/p>\n\n\n\n

3) We then combined and synthesised the information from steps 1 and 2, with data which focused on people with learning disabilities. This is called triangulation<\/a>. We did this to generate recommendations on how we can improve cancer screening for people with severe mental illness and people with learning disabilities.<\/p>\n\n\n\n

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What was our approach to patient and public involvement?<\/h2>\n\n\n\n

We involved a total of 5 people with lived experiences; 3 people with severe mental illness, and 2 people with learning disabilities. Karen and Simon were part of this. The people with lived experiences were invited to be experts at different stages throughout the study. People with\u00a0severe mental illness were involved from the beginning, and we involved people with learning disabilities to help with triangulation and making recommendations. Everyone was invited to be involved in all activities, and given a choice to be involved or not.<\/p>\n\n\n\n

We embedded co-production and patient and public involvement<\/a> from the outset and throughout the study. We found this a helpful approach for the study. This helped us develop strong working relationships from the outset and we became a team. It meant that everyone knew what had happened previously, and what the next steps of the study were. It provided consistency for the entire team as everyone knew each other. It also meant experts with lived experiences could be involved in a variety of activities if they wanted to, and the list of activities experts completed throughout the study is in Figure 1 below:<\/p>\n\n\n\n

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Figure 1: Co-production Activities<\/figcaption><\/figure>\n\n\n\n

Were experts paid for their involvement?<\/h3>\n\n\n\n

Yes, experts were paid for their involvement. Experts were paid using the NIHR payment rates<\/a>. The research team set Karen and Simon up as noncontractual members of staff with the university. This was the preferred option for most experts involved, Karen recalled a previous opportunity being asked if she would accept vouchers as payments. This was deemed not appropriate and not reflective of the precious time and input from experts.<\/p>\n\n\n\n

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Brief summary of research findings:<\/h2>\n\n\n\n

Here are the key points from the study.<\/p>\n\n\n\n