We all have our strengths and weaknesses. For instance, we recently discovered that none of us can cut our own hair. But one area that we at Skin and Blister can definitely claim expertise in is clinical trials. We all thrive on making the experience of clinical trials positive for both patients and healthcare professionals (HCPs).
Despite our focus on patient engagement, we don't often get the opportunity to feel what it is like to participate in clinical trials. So, when a member of the team was invited to take part in a breast cancer screening study, they jumped at the chance. Finally we’d get a behind the scenes look at a real-life clinical trial, through the eyes of a study participant.
The experience of taking part in the trial was interesting, illuminating, yet sadly a little underwhelming. We had a chat with our patient insider to see what she’d learned.
How did you feel about taking part in a trial?
Really excited! I’d never been on a study before, and I hoped it would give me a much greater understanding of what patients go through on clinical trials. From a nosey point of view, I wanted to see how other trials were being run, and what information patients and HCPs were given.
How did the trial meet your expectations?
The trial was certainly eye-opening, but overall I was left feeling disappointed. This was due to two key areas
The communications weren’t interesting
I found out about the trial when a letter with an appointment time and brochure came through the post. The brochure was just a simple sheet of A4, folded into three. It wasn’t very exciting, and it contained only the most basic information and a website URL. I attended the trial because of my interest in clinical trials, and because it gave me access to early breast cancer screening. But I wouldn’t have been attracted by the communications otherwise.
It really emphasised to me the importance of making your communications appealing if you want to attract and retain participants. Especially if your study will be challenging to recruit for.
The onboard site teams weren’t well informed
When I attended my first patient visit, I sat with a nurse for no more than 5 minutes (even though I had loads of questions) before I went in for the screening. She didn’t have much knowledge of the trial itself, or what the next steps would be. I wasn’t told why joining the trial was important, beyond it being a health check for me - and I had no feeling that I was part of a wider community, or making a broader scientific impact.
The HCPs on this study clearly needed more information, both to get them excited about it and to fully inform the participants. If your site staff are excited about the trial, then chances are, your participants will be too.
How did taking part in the trial make you feel?
To be honest, I was left feeling deflated. I was so excited to experience the other side of clinical trials, but my experience of this study was quite a sad one, really. As a busy person who had given up my time to take part in the study, I wanted to feel appreciated. I would also have liked to know what the study was for, and what the impact of it would be. Although my primary motivation for taking part in the study was to access early breast cancer screening, I would have been fascinated to know how the trial fit into the bigger picture. There hasn’t been a follow up to give me any more information, and it’s left things in limbo for me.
I’d definitely take part in another study (because I’m a clinical trials nerd), but I feel like more than a few people would be put off the idea after the experience I had.
What have you learned from taking part?
Although this experience acts as more of a ‘what not to do’, it’s helped validate a lot of what we already do at Skin and Blister. We always put the patient and the HCPs running the trial at the heart of all of our communications. Having informed study site staff, and engaged participants who will want to see the trial through to the end, makes a massive difference to success. And ultimately, we want people to feel happy to have completed a trial, rather than deflated. Whether people are participating to access treatment, or to contribute towards treating others like them in the future, it is so important to make every patient feel cherished, appreciated and part of something bigger.
We’ll definitely jump at the chance to take part in more clinical trials, but in the meantime we will continue to put the care into every patient and HCP communication. 100% of Skin and Blister’s clients would recommend us to their colleagues and connections. If you’d like to ensure that every patient experience is a positive one, get in touch here firstname.lastname@example.org.