Writing a lay summary is so much more than avoiding difficult words and using a logical structure. It can actually be hugely beneficial to your clinical development, now and in the future! So how can you be transparent and simultaneously boost the interest in clinical trial (CT) participation?
It’s not always easy to briefly describe to the general public what you are doing exactly during your CT, let alone write about the final results of months and years of research. However, it is vital to give feedback to the participants, for many reasons. Firstly, it gives them insight on the results of the sacrifices they made during the CT (trust me, wash-out periods often aren’t a walk in the park!). It’s also a unique way to make them feel valued and validated. This will make them feel acknowledged, now who doesn’t want that? And, at the same time, it is a golden opportunity for the researcher to give back and to invest in a good relationship with not only the participants, but the whole, often tight-knit disease community. So, how about having those lay versions easily accessible also to non-participants, like in open source? All of course in a reasonable time-span within one year after the end of a clinical trial.
This would be a big step forward. To make sure truly all participants are acknowledged and informed, lay summaries should also be made available in multiple languages. The medical world is dominated by English articles, lingo, summaries and reports. That works well for professionals. However, the majority of the target audience are non-English natives. There is no better way to inform patients than in their mother tongue. Talk about true acknowledgement.
To further increase readability, visuals can be added, a touch of colour can make a world of difference. But most importantly; when writing, see it through the eyes of the participant, of the patient, of the disease community. By giving information they want and they need to hear, by adding striking examples that matter to them, and by enabling them to identify with the examples given.
If this seems daunting or you are a newbie author: reach out to the relevant patient organisation and I bet they will be willing to assist you. They are often extremely knowledgeable and experienced in reviewing your draft and giving valuable comments. Fact: they want to be part of the solution. And it gets even better: dissemination will take place ‘automatically’, thanks to their often impressive network.
Warning: possible side-effects of lay versions include recruitment boost, motivated candidates, higher retention, knowledgeable contributors and happy participants.
Yes, the ultimate completion of your scientific paper and CT reporting is the multi-lingual lay summary!
To know more about lay summaries, you are welcome to participate to EFGCP Multi-Stakeholder Workshop on Communicating Clinical Trial Results to Meet Public Needs – A Meaningful Future for Lay Summaries, 29 May 2015 at Thon Hotel EU Brussels, Belgium. Click here to access the registration section and programme of the workshop.6