How to Be A Good Advocacy Partner In the Time of COVID-19
With the onset of COVID-19, the world has turned upside down, and our healthcare system is ground zero in the fight to save lives and to support patients and their families. While we don’t know what’s ahead, we do know that patient organizations are an important source of strength and support for patients and their family members—especially now, with many vulnerable, at-risk populations in desperate need of validated, credible information tailored to their specific needs.
We have received inquiries from many of our clients who are eager to hear what other companies and advocacy teams are doing to manage and sustain their advocacy relationships, and how to continue being good partners to patient advocacy organizations.
In the context of the realization that many advocacy organizations may be simultaneously facing both a dramatic surge in request for services and an equally dramatic decrease in funding, we have gathered suggestions on ways companies can support them in the uncertainty of the coming months and help collectively address the new challenge of COVID-19:
- Advocate internally for patients and organizations. We have heard that many rare disease patients are being impacted by delays in shipping medications. The advocacy person plays a critical role in ensuring that patient needs are kept top of mind; ensuring that supply chains are not impacted and that patient assistance programs are fully staffed to help manage access issues and other patient needs.
- Re-allocate sponsorship dollars designated for a now-canceled gala or walk/run. Consult with internal compliance about how you can shift the funds to unrestricted charitable giving or to support another program. Many organizations, particularly smaller ones, may be suddenly struggling to maintain core programs, to develop COVID-specific programs, or to simply keep the lights on.
- Support and/or help publicize your partners’ virtual fundraising events on crowdfunding platforms such as Kickstarter, Indiegogo or Causes, which allow groups to raise funds without having to convene large numbers of people. Even if you can’t provide public support, circulate the opportunity internally to employees to continue fostering a mission connection between an organization and your staff. Consider matching employee donations, where possible.
- Provide timely, comprehensive communications to advocacy organizations about clinical trial practices and protocols that guard patient safety. Clinical trial organizations are doing everything they can to keep trial participants safe during the coronavirus, yet some patients may be wary of participation in the current environment. Additional, targeted information would be especially helpful right now to reduce fears and demonstrate corporate commitment to patients.
- Host ad boards, focus groups, patient councils and other meetings virtually. We’ve investigated a number of resources for managing online meetings of varying degrees of complexity, from a simple educational webinar presentation, to an interactive discussion with Q&A, to hosting an entire conference online. Since many of the tech companies providing these solutions may be benefiting now from the surge in remote meetings, it’s worth asking when signing a contract whether they would consider donating some of their revenue to nonprofit patient organizations.
- Provide funding and/or technical support to help an organization migrate their in-person groups to virtual platforms. Patient support groups that meet in person can be a source of strength for people with serious illness. Organizations such as Inspire, PatientsLikeMe and Patient Empowerment Network have a track record in managing patient communities and may be willing to provide expertise and knowledge to help convert in-person groups to a virtual model.
- Work with internal field colleagues who may call on nursing homes and assisted living facilities to make sure they have updated information on the patient organizations offering telephone and online support. Many of the elderly are isolated in facilities right now and could use access to friendly and informative support over the phone
- Consider directing discretionary funding to nonprofits providing practical services such as maintaining food delivery to those who are ill or isolated.
Stay safe, wash your hands, and don’t touch your face!
What are you doing to support and maintain relationships with your advocacy partners during this challenging time? Send your thoughts and suggestions to firstname.lastname@example.org and we will continue to share to our collective benefit.