What patients/ the public want to know…

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… is not always the same as what others think they need…

One of the first projects TwoCan worked on was to write an introduction to clinical trials for the public. So we consulted the public to find out what they wanted to know about trials. Top of their list was an explanation of what would happen to them if they took part in a trial. Bottom of their list was how trials work. When we looked at the leaflets on trials that already existed, every single one began with an explanation of phase I, phase II and phase III trials. It was a valuable lesson for me. Sometimes what experts think the public need to know, is not the same as what they actually want to know…

I recently worked on a project to update INVOLVE’s Public Information Pack – the popular PIP Pack, now available on their website. Drawing on this earlier experience, I began by consulting a wide range of patients, members of the public and PPI leads, about what they thought would be important to include in an introduction to involvement in research. Many of them were very experienced in involvement and could reflect on what would have been most helpful to have been told at the start. Some had only just begun to get involved, and could identify the questions they still wanted to ask. A huge thank you to all of them for their expertise and advice! And an even bigger thank you to the excellent Sam Goold from INVOLVE, my collaborator on this project.

Two topics were consistently identified as the most important things that patients/ the public wanted to know. The first was about how research is valuable to anyone who receives any form of healthcare, as research produces the evidence that informs their treatment. They said they hadn’t always understood the link between research and health services at the start. The second thing they thought people needed to understand was how the knowledge they have gained through their lived experience is valuable to researchers and helps to improve research – what it is that patients/ the public bring to the table?

Interestingly, they said they didn’t need to know how research works – not at the beginning anyway. They explained that they sometimes heard mixed messages on this. On the one hand, they were told ‘You don’t need to know anything about research to be involved – your knowledge based on your lived experience is enough’. Then, at the same time, they have been given a whole load of information about different types of research – e.g. qualitative versus quantitative research and how clinical trials work…

They said going through the technical information was hard work! It’s often dry and factual information that could be easier to take on board when you can relate it to real life. So for example, it would be easier to learn about how a phase III trial works when you’re involved in one, can understand its aim and follow the process over time.

So for this reason, the new PIP documents don’t go into all the technical details of research and start at the place where the patients/ members of the public begin their involvement experience. I hope this means these new docs provide an introduction that is useful and relevant to them – what they really want to know, not what we might assume they need.

 

 

 

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