As a company, we see that every conversation and connection can have an impact. In the health space, often the most important connections are between patient advocacy groups and research organizations – one can’t succeed without the other. Research gives patients options and access to alternative care (through clinical trials or newly approved treatments), and advocacy groups represent the engaged patient communities that are looking to participate in clinical trials that push research forward. This is a snapshot of the advocacy-research dynamic at its highest level but there is progress that can still happen to further enrich these win-win relationships for better patient outcomes.
At the earliest stages of new research development, patient advocacy can be instrumental in providing insights that ensure research is focusing in the right direction, informing crucial questions such as treatment necessity, regional need, or the current standard of care burden. Nurturing advocacy relationships over the long-term can also bring patient insights into the protocol design stage, guiding the set up of research that patients can comfortably participate in – without adding burden to their lives. Essentially, advocacy insights can guide the success of a clinical trial from drug development through to treatment approval.
Changing our lens to look at how Pharma gives back to advocacy, recent history shows significant strides forward in the recognition of the importance of advocacy groups for successful research, and more thought/resources allocated to giving back. Education and funding are two key areas in which Pharma has been able to better support advocacy, but there are many more ways this can be done. Enriching these relationships may actually be a lot more simple in some cases though; we regularly hear how important it is for advocacy groups just to feel like they have a seat at the table, and a respectful/empathetic ear listening to them when they get there.
Another area for Pharma to prioritize is diversity and inclusion. Ensuring that advocacy groups representing all communities have an equal chance for a seat at the table (and equal access to clinical trial opportunities) can begin to close the still obvious and worrying gaps in representation. In 2022, this may be the most important way that research gives back. In conversations with advocacy groups, we’re often told how impactful it is for research to openly recognize its historic mistreatment of specific communities, and be ready to go further than halfway to repair the trust. Furthermore, equalling out clinical trial representation in 2022 cannot be a one-size-fits-all approach, as each community has differing needs, sentiments, and challenges. This makes tailoring each community relationship a non-negotiable in order to bridge those gaps in research involvement.
As a final takeaway, our advocacy partners have shown us that the most impactful first step is to set a table for conversations- one where all voices are equal. Staying curious also goes a long way to ensuring continued learning, as research develops an understanding of how to best give back. This can begin to facilitate the kinds of symbiotic relationships that will advance inclusive research, and leave ever more patients better off.