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Research participants- critical friends, agents for change

#apaperaday: Research participants: critical friends, agents for change

In today’s #apaperaday, Prof. Aartsma-Rus reads and comments on the paper titled: Research participants: critical friends, agents for change

The paper is about research participants’ involvement based on the Genomics England project, by Ward et al and is published in European Journal of Human Genetics. DOI: 10.1038/s41431-022-01199-3 Genomics England is a project where 100,000 individuals from the UK are genome sequenced.

The project has resulted in genetic diagnosis for rare disease patients and allowed better treatment for patients (e.g. with cancer). The project has a ‘participant panel’ which has self nominated members from all over England. The majority is a patient or carer.

The paper is worth reading entirely. Some highlights here. Authors identify two ways in which participants can be involved in a research project like Genomics England: invited to the party and as gate crashers. 

The invited to the part is related to ‘intended contributions’ while the ‘gate crashing’ contributions are unintended contributions – i.e. the ones flagged by participant panel that need action but where not initially foreseen. Both are important & participants outline in the paper that having good communication is crucial to facilitate this.

Intended contributions relate to ethics, e.g. having to re consent children who are part of Genomics England when they become adults. The authors stress that communication to participants has to be carefully done, as information about a genetic disease or risk can be traumatic.

For the ‘gate crashing’ role authors give an example about unintended findings. 82% of Genomics England indicated they wanted to know about unintended findings (e.g. genetic diseases or cancer risks). However, post covid the participant panel suggested reevaluating this as preferences might have changed. Letters were sent out to all participants and 12000 responded. Only a small subset changed their preference about knowing unintended findings, but of course this is crucially important to those individuals.

Authors give some lessons as well: 

  1. Realizing the voice of participants (and patients) is important. 
  2. Regular communication is crucial to facilitate intended and unintended (but still relevant) feedback. 
  3. Make clear to participant panel members how much time it will take
  4. Panel members will become specialists if they stay in the panel longer 
  5. Be prepared that extra work may be needed due to things flagged by the participant panel.

Good to read this experience of the panel members and how they contributed!