In the era of digital media, with more patients receiving medical care from home, the healthcare industry has an opportunity to support and advocate for patients and provide platforms for patient movements. I recently had the opportunity to help plan and attend a virtual session on patient advocacy as part of W2O’s SXSW virtual panels. As an advocate myself in the food allergy community, this gave me the opportunity to reflect on the changing nature of the patient experience.
Moderated by Steve Madden, Editor-in-Chief of MM+M, the session was joined by Jim Weiss, Founder and CEO of W2O, Samina Bari, Senior Vice President of Corporate Affairs at Aimmune Therapeutics, and Amar Kendale, Chief Product Officer at Livongo Health.
The speakers covered topics ranging from the patient perspective on value and access in healthcare, to navigating the patient journey, to the importance of patient voices in the medical community. Following are some highlights from the discussion:
- “The involvement of patients in the healthcare system is essential.” – Jim Weiss
Healthcare movements are often led by patients bringing important perspectives to the forefront of the medical community. Both industry and patients benefit when we work together. Showing our support for patients means listening and learning, which can happen authentically when we reach out to build relationships with patients who share their journey publicly.
As an advocate myself, I’ve been on the receiving end of outreach from many healthcare companies who truly valued my voice and input, as well as those who were simply hoping I would promote them or their treatment without first establishing a strong foundation of trust and respect. Patient advocates are more savvy than ever and are ready to share and provide their perspectives if asked. This is a necessary step in partnering with patients and ensuring they have a seat at the table.
- “We have to listen better, we have to be on the lookout.” – Samina Bari
Motivated patients are often passionate, vocal and organized in getting answers from the medical community and driving change. Many of these larger conversations have been made possible through social media, and we need to listen.
Through social listening, we can see patients connecting with other patients, physicians, politicians and practitioners – these discussions with key stakeholders can be leveraged to make real changes. As organizations, we can learn from these conversations to better understand patient needs and support them by lifting their voices within these online spaces and including them in key conversations where they may not have otherwise had a voice.
- “The digitization of clinical trials using more passive data, being more directly connected in a person’s normal workflow as the basis to collect evidence, will then inform R&D and treatment paradigms over time more and more.” – Amar Kendale
At W2O, we’ve always followed the data. As the healthcare industry becomes increasingly more data-centric, we have a responsibility to continue following the data to focus on the needs of patients. Healthcare technology has allowed medical professionals to engage with patients in their everyday lives, through telemedicine, apps and patient portals, which can provide additional comfort for patients, especially during the COVID-19 pandemic and into the future as the healthcare landscape continues to evolve.
During my last 10+ years serving as a parent advocate for my son and being active in patient communities, I’ve experienced firsthand how healthcare companies have made an increasing effort to bring patients into the conversation. This is foundational to how we counsel our client partners on how to work with patient influencers and advocates at W2O. Not only is it essential to understand the patient perspective, it also helps validate and affirm the patient experience. We all deserve to have a voice when it comes to our health, and it is up to healthcare companies to incorporate patient advocacy into the fabric of everything we do.