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Can involving patients in design transform the clinical trial experience?

While the research space is a heavily regulated environment and there are rules that we must abide by, this doesn’t mean clinical study materials have to be ‘boring’ or the overall study design must be company driven. There’s still opportunity to get creative and get and even better, get patients involved with design. And there’s big benefits of doing this, too!

In healthcare, ‘co-design’ simply means involving patients during the design process and working with them to understand their needs and preferences. This creates something that’s relevant and improves the clinical study experience for both them and you.

At COUCH Health, we fully understand the importance of creating clinical study materials that not only provide all the information that a patient needs, but that are engaging and something that they want to read too.

But how do we know what engages patients? What information do they actually want to see on a poster or inside a leaflet? What outcome do they really want from a clinical study? The best thing to do is ask the experts: the patients themselves.

The importance of involving the expert

Patients should be actively involved in clinical trials, from the very beginning and all the way to the end. Because even if we think we know what patients want, we don’t. So, it’s important to listen to them and be willing to take their feedback on board, so that your materials will be as relevant as possible. Plus, getting your patients involved at the beginning of the study, such as during the design process, allows them to gain a better understanding of the study. You can build a trusting partnership with patients, and it’s more likely they’ll be willing to take part.

So, why is it so important to get patient insights? Because if your motives and expectations of the study are different, and you’re just simply not on the same page about the outcomes of the study and what the materials should include, then it could hinder your patients’ involvement. And with low recruitment and retention rates being a current issue, if there are any steps that we can take to improve them, we should try!

Evidence that co-design works

There’s evidence out there that people are co-designing materials with patients and incorporating their insights and preferences. The result? Compelling, patient-driven materials.

  • Here at COUCH Health, we heard some examples of co-design for clinical study materials at a patient engagement conference. Pharma companies are increasingly getting patients involved, from designing patient websites, to the design of the study protocol. And by taking feedback on board earlier on, they were able to make relevant changes to avoid potential complications further down the line.
  • Although not specifically a clinical study recruitment material, this research looked at creating an educational material – a self-awareness workbook  – to help smokers quit or reduce their harmful alcohol use. To design this workbook, researchers invited adult smokers to a patient engagement event to get them involved in the design. Through individual reflection and group discussions, the patients selected the resource’s content, structure, and titles. And the result was a workbook that combined patient-driven features, community-sensitive information and evidence-based material. And this exact process can be replicated in other settings too, like creating clinical study recruitment materials.

Ultimately, by listening to you patients, you can incorporate their preferences to create study materials they’ll want to read. At COUCH Health, we gained some insider insights from patients themselves, learning about what they would and wouldn’t want to see on a clinical study poster from colours to the copy. And from this, we can now take it on board to create materials that patients will want to see. You can read more about research we did in this area here.

The key message

By combining your patients’ experiences with your own clinical study expertise, you can create compelling content that’s useful for patients that are considering a clinical study. And that’s our ultimate goal at COUCH Health, too; to take our understanding of the scientific environment, expert communication strategy and combine this with patient insights to create authentic content for patients.

Looking to find more ways to engage with your patients and improve clinical study recruitment and retention? You can gain some more insights in our white paper on patient engagement, download it here.

This blog was first published here: https://www.couchhealth.co/post/patient-involvement-can-it-transform-the-clinical-study-experience

12th August 2020

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