Antidote Partner Profile: A Q&A with Patients Rising
Helping patients find out about clinical trials is one of the chief pillars of the work Antidote does, and one of the ways we do this is through our partners. By building a network of nonprofits and patient advocacy groups, we are able to reach patients where they are and help them find clinical trial opportunities that may be a good fit.
Today, we’re happy to feature one of our newest partners, Patients Rising. This organization provides education, resources, and advocacy for people living with chronic and life-threatening illnesses, with a strong focus on patient-centricity and the importance of health literacy. This Partner Profile showcases our Q&A with the Chief Patient Officer at Patients Rising, Jim Sliney Jr., RMA — check it out below.
A Q&A with Patients Rising
How does Patients Rising build community among patients and caregivers?
We find that the key to building meaningful relationships with our audience is something we call “compassionate listening.” When the people we serve tell us about their frustrations and challenges, their successes and joys, that becomes our compass, and it guides us to serve them and their needs as best we can.
We also give them functional tools, like our PatientsRisingStories platform, social media features, podcasts on which they can be a guest, courses to take, and articles that share valuable information. We want them to be successful patients and I think that motivation is the cornerstone of our community.
In addition to your efforts to provide resources and education, Patients Rising also devotes effort to patient advocacy. Could you tell us a bit about the work you do in this arena?
Patients Rising is built like a continuum. We meet patients where they are on their journey, then we build and offer support mechanisms and educational opportunities. From there, as patients, caregivers, or patient allies begin to get more confident, we offer them instruction in legislative advocacy. As they learn legislative advocacy, we then offer advocacy opportunities, like our annual “We The Patients” fly-in where they get to meet with congressional offices to advocate for patient rights.
The Patients Rising Patient Equity Council is composed of stakeholders aimed at increasing inclusion throughout medical care. What is some of the work the Council does that makes an impact?
The Equity Council works in two different ways. On the one hand, we bring projects to them to review, and they apply their lived experiences through a lens of equity, and they give us helpful feedback. On the other hand, we give them autonomy to bring topics to our attention from their daily lives and experience. This can sometimes lead to articles like “Inequity in Healthcare: Studies Show the LGBTQ+ Community are Less Safe on Public Transportation”.
Your new podcast, Always on Call, features conversations about caring for a loved one with dementia. What types of topics do you cover?
I’m happy to say we cover the topics that the people ask us to cover. Caregivers are up against many obstacles, so we may talk about the use of emergency services, support organizations that assist caregivers, or the latest technology to assist with caring for elders…it’s really very broad because the needs are broad and caregiver experiences vary so much. Kris, our podcast host is the real deal. She’s been caring for her grandmother for years. She’s seen it all and so can guide discussions compassionately and with tons of lived experience.
Why is it important to increase patients’ knowledge of clinical trial opportunities?
We all know that only because a treatment exists doesn’t mean a person can access that treatment. Our Patient Helpline directs people to find patient assistance programs, copay support, discount drug services, and so on, but sometimes it's not enough.
When patients and caregivers know that clinical trials are a viable option to access treatments and expert medical care, they are more likely to put clinical trials in their patient toolbox. I worked in rare disease clinical trials for 15 years and it taught me that, especially in rare diseases, the standard treatment plans are sometimes not enough. Clinical trials don’t just move medicine and science forward, they can also provide tangible benefits and world-class healthcare to people without many other options.
How do you anticipate that your partnership with Antidote will help you raise awareness about volunteering for medical research?
Firstly, the Match Tool that Antidote provides is an excellent way for people to access information about trials that relate to them with relative ease of use. But more importantly, having a partner like Antidote means that if a patient or caregiver reaches out to us having expended all other possible avenues of treatment, that we have experts in our network who can demystify getting involved in research. The experts at Antidote give us the ability, not to push people towards research, but rather to offer them an easy path to understanding if clinical trials are right for them or offer them solutions they can’t find anywhere else.
If you'd like to learn more about the clinical trials Antidote has available for patients, click the link below to get started.
