Case study: conditions for successful patient advocacy in a large research organisation

What is needed for successful patient advocacy in a large research organisation?

Lead Educator, Jillian Hastings Ward and colleagues set out some of the lessons they learned through their work with the Participant Panel at Genomics England, which are relevant to patient advocates in genomics around the world, through their 2022 paper, Research Participants: Critical Friends, Agents for Change.

As previously described in week 2, in the interview with Sir Mark Caulfield and elsewhere, the Participant Panel was set up (in 2016) to advise Genomics England about what mattered to the people whose data it was collecting for the 100,000 Genomes Project. The Participant Panel is about to celebrate its 10th anniversary but it is still made up entirely of people who have consented to share their own whole genome sequences, or those of a loved one, with Genomics England for research purposes. The Panel is funded by Genomics England but it remains independent of it: Panel members are not employees of Genomics England. The success of the 100,000 genomes project saw the evolution of the Panel’s role, to become representatives of all the people whose data is now being collected in the National Genomic Research Library.

As the relationship has matured between the patient advocates on the Participant Panel and the senior leadership team at Genomics England, the Panel has been able to evolve. By 2022, the Panel had two main types of activity:

• invited guests where its involvement was requested and led by employees of Genomics England or the researchers they collaborate with, and
• gate-crashers where its involvement was self-determined and pushed beyond the original expectations that the host organisation had about their role.

Both of these types of patient advocacy roles can add value to host organisations. But they do require a strong bond of trust and solid relationships between the senior leaders of the organisation and the patient advocates, which takes time to develop (as discussed in this step).

In order for patient advocates to maximise their impact in working with a host organisation, Hastings Ward and colleagues made the following recommendations:

1) Patient voices should echo around the whole organisation, not only in discussions with subgroups of colleagues. Sharing patient stories with staff at induction events can be an effective way of achieving this, as well as embedding patient advocates as independent advisors on key decision-making groups within the organisation.

2) Senior leaders in the organisation should routinely and regularly consult with people whose data they hold, to seek and reflect on their views of the organisation’s activities.

3) Patient advocates working with a host organisation should have clear Terms of Reference which include an indication of the amount of time they are expected to spend on this role and how their contributions will be recognised.

4) Patient advocates working with a host organisation over many years will become experts in their field but this can also lead to a loss of objectivity or critique – it’s important to set an expectation that new voices will and should come in to replace the original ones over time, in a carefully managed and respectful way.

5) Most importantly, patient advocates should only ever expect to represent people with similar lived experience to their own, and should ensure that other people with different lived experiences are also invited to the table as equal partners in relevant discussions. The idea that a single patient advocate can provide ‘the patient voice’ for any healthcare or research organisation is simply not true.

Up until now, we have focused on where patient advocacy can influence research that is either already funded or where the research team is applying for funding. We will now hear about a very different form of patient advocacy, where advocates have directly funded research that mattered to their communities.