admedicum Business for Patients organized a series of small roundtables with patient and industry experts. This is an anonymized summary of those conversations in order to help you with your own decision making. With the current challenges in the healthcare system, we believed it important to listen to patients, understand their concerns, and co-create strategies to lessen the impact of challenges imposed by COVID-19. 

As a first step sponsors need to reach out to the patient communities where they are active and offer information (as it becomes available) and support. Sponsors have to rethink their communications activities and try to create a calming effect by looking at things from positive perspectives. There could be opportunities in this slowdown time to find cooperative projects to raise disease awareness while continuing to build trustful relationships.

Companies and researchers need to create a Patient Communication Plan, which could be an ongoing document or website, for sharing information with the patient community now and when restarting trials after COVID-19. This plan could share proposed changes to clinical trials, address risks, and act as a checklist for preparation.

Patient organizations are doing truly amazing work by updating their members on COVID-19 precautions, guidelines, and ideas for mitigating the damage on webinars, dedicated webpages, and even setting up telephone helplines.

In some cases, learned societies partner with patient groups to answer patients’ questions and create detailed responses to continue to support patient communities. For example, see The novel Coronavirus and the COVID-19 Disease Information for Chronic Phase Chronic Myeloid Leukemia Patients State of the Art. Sponsors can look for ways to support these publications or partnerships.

 

Patient organizations are also organizing online conferences and webinars that bring together the leading companies in their disease area, scientists, researchers, and the patient community to address issues both related to COVID-19 and the future of research in the disease area. Sponsors may have more technical knowledge for digital conferences in-house or access to specialists to assist these efforts.

 

Both patient organizations and companies can create engaging, informative digital content to meet patients’ needs during this time, to continue building a sense of community, and to keeps the importance of public participation in research at the top of their minds. Examples could be patient advocate interviews, podcasts, or short home-made videos.

Overall, showing appropriate empathy with patients that may be facing an above-average risk to be harmed by a COVID-19 infection, should be an essential part of patient communication these days.

Covid_Roundtable_Summary_admedicum.pdf (139.4 KiB)