You don’t have to worry about blinking and missing something in UK research if you are a patient. No. You could probably have a metaphorical afternoon nap. Or whole night’s sleep. Perhaps even frozen cyrogenically for a few years. And still be waiting for some things to happen that are in yours and mine interest.
Yes, we are talking about transparency and openness in health research again. It’s a massive issue. For as long as I can remember. Of most concern is the fact that we are still not good at sharing the results of research studies with those who took part. I mean, how many wake-up calls do we need to get it right eh?
Well, today, the Health Research Authority (HRA) has launched a public consultation on openness and transparency including how to get research results to participants. On its website it has stated what it has decided to do. It says:
Sharing the results of research studies with the people who took part
We want to make sure that the people who take part in a study can access the research findings in a format they can understand. This respects participants and acknowledges their contribution.
To ensure better feedback to participants, we have already decided to:
- change the question we ask applicants from whether they will share study results with participants to how and when they will share them (where appropriate)
- ask sponsors to submit a lay summary of the study results to the HRA (no longer than 12 months after the end of the study), which we will then publish.
Which is good news.
It’s also asking for people to take part in its survey where you can make suggestions for additional activities. I hope you will. Or attend one of its workshop around the country. More details on both here. I hope you will do that too!
My impression is that on this issue as in others, many researchers and patients are already adopting their own good practice rather than waiting for permission – holding results tea parties, or conferences or sending out results proactively. Its often institutions and organisations that are risk-averse or just plain lazy at going the extra mile for those without whom they wouldn’t be able to do the research anyway. Choose your pick. Anyway, I am sure this would be a good time to share with the HRA any good practice you’ve seen.
Some funders are also forcing the issue. Last week I met with colleagues from Telethon Kids in Australia who tell me they have a +10 rule. It means that researchers get an extra 10% uplift on their grant if they commit to plans for public involvement, dissemination of results to participants and ensuring diversity and inclusion in how they work. Sounds quite a good idea to me. At least you get properly funded plans instead of words as hollow as a tin drum.
It’s worth mentioning also at this point that NIHR’s new and improved website for people to find out about open and recruiting trials – ‘Be Part of Research’ – is now up and running here. While some of the functionality is the same, the surround sound of more general information is not. It’s all in preparation for linking to the NHS App in 2020 and, in time, providing research results too.
Finally, I have been interested to read the comments about the pros and cons of including research dissemination within the remit of the new ‘INVOLVE’ Centre for Public Involvement, Engagement and Participation. Personally, I think it’s a good idea. From a practical point of view we know that not enough public involvement takes place in analysing and disseminating results. From a principal standpoint it might actually see greater movement to ensuring people’s right to information is fulfilled.
I’m keeping my eyes wide open from now on, that’s for sure.