Lab Activity 3 - Alternative funding sources for priority setting activity
The JLA has been approached on a number of occasions to consider whether a JLA PSP can be funded directly by a commercial organisation. 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, the global pandemic has meant many charities and other groups are now under severe financial pressure. Should the constraint of avoiding commercial funding mean that they should be prevented from working with the JLA to set research priorities with their community?
The JLA recognises this challenge and would like to test the assumption about possible influence of commercial funding on priority setting activity. We will do this within the JLA Lab space, away from the usual JLA PSP activity, to ensure the integrity of the main PSP process and ensure a clear separation.
The JLA has agreed to work with Crohn’s & Colitis Australia to develop a priority setting exercise that replicates the JLA method but is funded by mixed unrestricted grants from a pharmaceutical organisation and philanthropy. The pharmaceutical 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 information. There is 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. This work will not be described, branded, or reported as a JLA PSP. We will assess the outcomes and impact and report back on all findings, including how the project is perceived within the JLA community and any concerns.
Questions and answers:
How will you differentiate this from the other JLA PSPs which have worked hard to avoid commercial funding?
This is not a JLA PSP and will not be described as one. This is an experiment that will help the JLA to understand and report on how, or if, the commercial source of funding has made a difference to the priority setting work and people’s perceptions of it. Crohn’s & Colitis Australia will be working with the JLA to set their community’s priorities for research. We will ensure the process is transparent.
Why does the JLA want to try this now?
The creation of the JLA Lab has provided the opportunity to test alternative ways of working and gives the JLA 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 has limited other options for philanthropic funding at this difficult time. They want to use their commercial sources of funding to allow patients, carers and clinicians to have a say in the future research agenda and are impressed by the JLA’s reputation for strong consumer involvement. Waiting an unknown length of time until the financial situation recovers from the effects of Covid-19 will cause an unacceptable delay to helping their community set priorities.
How will you ensure that the commercial funders don’t influence the priorities?
Crohn’s & Colitis Australia will work with a JLA Adviser who will act as a neutral facilitator of the process and remain alert to any possible opportunities for the priorities to be unduly influenced. The funders do not require any involvement in the work. The grant funding is unrestricted, and the Medicines Australia Code sets out strict requirements which prohibit inappropriate influence. The JLA Adviser will be working as they would with any priority setting exercise to make sure the voices of patients, carers and clinicians are heard equally and that this is an independent process. The JLA will be evaluating the outcome of the process and we will be transparent about what seems to work and what does not. We welcome feedback from the JLA 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 no PSP should include funding from this source. However, to inform the JLA Lab’s work in this area we would be interested to hear from those who have considered commercial involvement in the past.
Does this mean that the core principles of the JLA are changing?
We reiterate our commitment to JLA PSPs and the principles. This is not a JLA PSP but an alternative activity which supports our community and tests a different approach. 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 the Advisory Group and wider public consultation on our website.
Are you concerned about the impact of this on the JLA’s reputation for facilitating independent, rigorous Priority Setting Partnerships?
Yes, which is why we are not allowing this to be carried out as a PSP. We are acutely aware of the importance of the JLA’s reputation for independence and integrity, and the JLA Advisers have always worked hard to maintain this. This is not a JLA Priority Setting Partnership and it will not be described as such. It is a separate activity conducted in the JLA Lab. We will be open to feedback from the JLA community about the work and are keen to understand perceptions of commercial funding in priority setting work, and the opportunities and challenges presented.
How will you evaluate how this has worked?
We are likely to involve the JLA Advisory Group in working out how best we can evaluate this activity and information will be published here. The evaluation will need to consider the Australian context in this instance and how this may differ from other countries. Delivering a commercially funded priority setting exercise is an important experiment for the JLA and we would welcome feedback on this activity.