The 2020 Medigy HITMC Awards Event is happening on June 30th at noon ET. By design, it will kick off with the Patient Advocate of the Year Award. Here at HITMC, we believe that patients are the center of healthcare. Putting patients up front in our events is our way of reminding us how important it is to keep patients in mind as we go about our daily work.
This year we have three phenomenal Patient Advocate Honorees.
Morgan Gleason. When she was just 15 years old, Morgan was hospitalized after contracting meningitis while getting an infusion for an autoimmune condition. During her stay, she spoke out about how she was being treated. Her patient advocacy journey started with this video. This past year Morgan has been championing price transparency. She was interviewed on CBS This Morning when she began highlighting how the hospital was being paid $202,000 more just because she changed insurance companies.
Mike Wenger. Mike has combined his skills as a software developer with his experience as a brain tumor patient to help improve access to clinical trials. He is the founder of Clinical Trial Connect and the new Vice President of Patient Engagement for TrialScope. This past year, Mike has led many conversations, working groups and product build outs that have bridged the divide between the different clinical trial stakeholders.
Barby Ingle. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author. Despite coming down with Valley Fever, Barby was still able to pull off the International Pain Summit in November.
We asked each of them a variety of questions about where we should be focusing our attention in healthcare, what impact their advocacy has had on healthcare and advice they would like to give the HITMC Community.
Listen to Patients.
“I have heard from healthcare providers and nurses that my stories have helped them understand the patient’s point of view,” said Morgan. “I think changing the attitudes and behaviors of healthcare workers to understand the importance of the patient experience is critical.”
Patient stories have always been powerful, but in the past, it has not been easy for these stories to be easily shared or heard. Thankfully that’s no longer the case with the proliferation of social media, blogging and YouTube. But having a medium for sharing stories is just one part of the equation. There also needs to be a willingness to listen to patients.
On this front there has been significant progress. More and more healthcare organizations are putting serious effort into their Patient and Family Advisory Councils (PFACs). Plus, greater attention is put on patient experiences now that ratings and comments have an impact on reimbursements and patient loyalty.
We still have a long way to go, but with patient advocates like Morgan, Barby and Mike, we are making positive strides.
Both Mike and Barby pointed to medications as a challenge that needs more attention.
“The COVID-19 pandemic has proven that drug companies are critical stakeholders in public health,” explained Mike. “Yet, many patients are wary of the motivations of drug companies and of clinical trials. Any activity that compromises the trust between a pharmaceutical company and the patients they develop solutions for needs to be addressed. And any behavior that sets patients up for success should be celebrated so that we can increase the publics’ visibility on this important work.”
“The challenge I see right now as needing the most attention is bringing the technology for production of medications into the United States and keeping it affordable for the innovators of it as well as the end users,” stated Barby. “I understand this will take a while and, in the meantime, I would like to see more transparency in the medication pipelines, and safety testing of products by the FDA.”
Drug affordability was a hot topic prior to the pandemic. There was public outcry over the skyrocketing cost of medications like insulin and EpiPens. Now that we are in the midst of the COVID-19 pandemic, we can add drug availability as a challenge.
In April, Chistina Farr at CNBC wrote a story about patients with autoimmune diseases were running out or hydroxychloroquine because people (and some healthcare organizations) began to buy it in higher quantities (and in some cases individuals were hoarding it) as a possible COVID-19 treatment. Morgan was featured in that story.
As drug companies race to produce a safe vaccine and other medications that can help treat COVID-19 related symptoms, we have an opportunity to address the challenge of equitable distribution and pricing. It will take many voices to bring attention to this issue in the coming months.
Patients Need to Come Together
“It takes everyone to improve the patient experience,” said Morgan. “Providers and nurses can choose to do little things that make the patient’s day better and to consider the individuality of patients in their conversations and treatments. Patients can speak up and share their needs and preferences. Family and friends can actively help patients not be on the journey alone. The healthcare ecosystem can improve the workflow and processes by streamlining processes and removing duplicate systems, such as my 23 patient portals!”
“There is plenty of room for innovation in healthcare,” noted Mike. “We can challenge the status quo without putting patients and institutions at risk. A key part of innovation is to expand the number of voices at the table, and to make sure we listen when they share their unique perspectives and novel ideas.”
Healthcare has always been a team sport. Patient advocacy needs to become one as well. By combining many patient voices into a cohesive whole, greater process could be made both at a local as well as a national level. This is not to say that individual voices don’t matter, but rather that banding together as patients, caregivers and concerned citizens, we will have more opportunities to influence the healthcare ecosystem.
Join us Tuesday June 30th at noon ET when one of these amazing patient advocates will be named Patient Advocate of the Year.