By John Lewis, Executive Director
Education and awareness are at the core of our mission as a nonprofit patient advocacy organization. I want to provide you with an update on our recent initiatives that are taking on a new dimension, especially in the areas of research and connecting patients.
First, in October we began training what I will call patient advisors to participate in research. We are doing this training through a Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute®. We had envisioned in-person workshops but because of COVID-19 we are rolling out virtual training modules.
We will prepare, initially, 40-50 patients and care partners to advise industry, researchers and regulators about how to design trials that best meet patient needs, from the convenience of participating to developing meaningful outcomes. This will be a valuable resource to any organization interested in researching heart valve disease.
The initial response to this training from patients has been overwhelming and we look forward to opening up the training to broader participation soon, as well as updating the course for a second round of formal training in April.
Second, we are continuing to develop our new patient community, “My Valve My Voice.” The launch of this community coincided with the COVID-19 pandemic, which we know has brought added anxiety to heart valve patients. We have undertaken several actions to establish “My Valve My Voice” as the go-to resource for patients looking for the latest information on how to manage their condition during this pandemic. We encourage you to share your stories as well.
As one example, when the COVID-19 pandemic began to spread and there were restrictions being placed on “elective” surgery, there was a lot of confusion among patients. There was guidance coming from everywhere. We felt compelled to synthesize all of these guidances in a way that made sense for patients. We will continue to advocate for more thoughtful and consistent communications with patients in this time of high stress.
Another part of this effort to build our community is to look at the language we use to ensure we are engaging with you, the patients we serve, in the most appropriate way.
As you well know, heart valve patients often have “comorbidities” – AFib, diabetes, cancer, COPD, hypertension, heart failure – and we want to create sub groups to support patients with these conditions. But we decided we needed a friendlier term than “comorbidities” so we landed on “co-existing conditions.” A play on pre-existing conditions. Much more patient friendly. Also, rather than “caregiver,” we are using the term “care partner.” Not only friendlier but also more accurate. We endeavor to make these language changes part of the standard vernacular in the patient and medical community.
Finally, Heart Valve Voice US is in a unique position to be able to influence public policy – legislative and regulatory policy – that not only improves care but also encourages clinical trial participation by making it make it easier, safer, and more convenient for patients. A top priority is ensuring telehealth is here to stay, especially for our Medicare population. And telehealth, remote monitoring, wearables all have implications for research.
But a second issue some of you may have not considered as much is expanding the Family and Medical Leave Act. We really don’t want care partners, or patients, going to work and then going home and possibly exposing their loved ones to the virus.
Among other things, proposed legislation would provide for 12 weeks of leave regardless of employer size, establish an eligibility window through February 28, 2021, and ensure no less than two-thirds pay for leave. This effort is being led by the Cystic Fibrosis Foundation and is an example of where varied patient interests can come together for positive change. As always, we are here to answer any question you may have or provide additional information about these topics. We look forward to our conversations with you. Please sign up for My Valve My Voice to stay in