TranslateLab Activity 3 - Commercial involvement in priority setting
The JLA has been approached on a number of occasions to consider whether a commercial organisation can either fund or be involved in a JLA PSP.
We have been unable to accommodate these requests as it would impinge on one of the JLA’s principles of excluding groups/organisations that have significant competing or commercial interests because of the risk of influence on the results, and the undermining – perceived or actual – of the JLA’s reputation for independence.
However, many charities and other groups are under severe financial pressure. Does the constraint of avoiding commercial involvement mean that communities shouldn't be able to work with the JLA to set research priorities? In addition, the landscape around commercial involvement in healthcare is evolving. The JLA recognises the challenges and is testing the assumption about possible influence of commercial involvement on priority setting activity.
The JLA agreed to work with Crohn’s & Colitis Australia in a priority setting exercise for Inflammatory Bowel Disease in Australia that was funded by mixed unrestricted grants from two pharmaceutical organisations and philanthropy. The pharmaceutical organisations took no part in the process and had no access to data or materials of the priority setting work until it was publicly available information. There was no requirement to report to the funders during the process, other than to mention the source of funding in any publications.
This is clearly distinct from agreed JLA principles. The report of the priority setting work outlines the background, the Australian context, and feedback received from participants when asked about the potential influence of the source of funding on the outcomes of the priority setting exercise.
Another PSP is now working in the UK to set research priorities for Faecal incontinence in Adults. The funding for this has come from a non-conditional, unrestricted grant from a commercial organisation to The Pelvic Floor Society. Again, the commercial organisation will not take part in the process or have access to data or materials of the priority setting work until it is publicly available. There is no requirement to report back to the commercial source of funding at any stage of the process. A report will assess the outcomes and any perceived impact of the commercial funding source on the process.
The JLA is also now working with a PSP to set priorities in Epidermolysis Bullosa. The work is being led by the charity DEBRA, and a commercial market research organisation will be involved in the consultation and management of the responses. DEBRA will work with the JLA to describe any learning from this commercial involvement in the PSP process.
Delivering a commercially funded priority setting exercise, or working with a commercial organisation to complete an exercise, is an important experiment for the JLA and we welcome feedback on this activity. Please email jla@soton.ac.uk with any comments.
Questions and answers:
Why does the JLA want to try this?
The creation of the JLA Lab has provided an opportunity to try to answer a question that we have been asked several times – whether priority setting work can be independent when it is directly funded by commercial sources.
Crohn’s & Colitis Australia had limited other options for philanthropic funding during the Covid-19 pandemic. They wanted to use their commercial sources of funding to allow patients, carers and clinicians to have a say in the future research agenda and were impressed by the JLA’s reputation for strong consumer involvement. Waiting an unknown length of time until the financial situation recovered from the effects of Covid-19 would have caused an unacceptable delay to helping their community set priorities. The Faecal Incontinence in Adults PSP similarly needed to take advantage of a particular grant to support its work, and the Epidermolysis Bullosa PSP needed the support of a commercial market research organisation in order for the PSP to happen. We want to support the needs of our community.
What about other groups who have wanted to undertake a JLA PSP in the past using funding from a commercial source?
The JLA principle of prohibiting commercial involvement in PSPs still stands and PSPs should not include funding from this source. However, the JLA will be happy to consider opportunities to explore this principle further.
Does this mean that the core principles of the JLA are changing?
We reiterate our commitment to JLA PSPs and the principles. This work in the JLA tests a different approach and is not our standard approach to PSPs. It doesn’t affect or undermine any standard JLA PSP activity. Potential outcomes of this work include confirmation that we cannot engage in priority setting activity that draws on commercial funding.
The JLA would only consider making changes to core principles following consultation with the wider community, including wider public consultation on our website.
