Patient centricity continues to play a pivotal role in how healthcare companies design and build clinical trials. The drive to get the patient voice involved in trial design has resulted in more companies interacting with patients and patient advocacy groups. As a result, advocacy organizations now play a greater role in supporting patient communities in almost every country.
Bristol-Myers Squibb (BMS) recently teamed up with GRYT Health to better empower patient communities during the global COVID-19 pandemic.
“We partnered with GRYT Health because they are able to run a virtual platform,” says Kathryn Metcalfe, executive VP for corporate affairs at BMS. “The partnership will allow us to reach a large number of patients across a variety of therapeutic categories and disease states to interact with them on a number of different topics. Our overall goal is to produce increased collaboration, information, knowledge sharing, and transparency.”
The initiative began when BMS took a close look at how the company was connecting with patient advocates and also how it was connecting with patients, particularly during COVID-19. The company saw an opportunity to serve the patient advocacy community in a way that it had not been able to do so in the past. BMS had worked with GRYT in the past, and was a sponsor of the Global Virtual Cancer Conference created and hosted by GRYT.
“We liked the idea of pairing digital learning with clinical trial research,” notes Metcalfe. “We felt it was a way to put people and caregivers first.”
Connecting Advocacy Groups
The latest partnership stemmed from the Global Virtual Cancer Conference held in October 2019. The virtual event attracted more than 3,000 registrants (mostly patients and caregivers) and featured 47 live events and 22 prerecorded sessions. The success of the event prompted BMS to examine why it was so popular and what factors may have led to that success.
“We realized the digital platform and the format of the event created a really unique experience for attendees,” states Metcalfe. “We received very good feedback on the event and made the decision to get involved with more of those events in 2020. As we planned those events, we also thought about other ways the technology could be used.”
That was about the time the COVID-19 pandemic hit clinical trials full force. BMS knew there were a lot of patients dealing with their diseases and suddenly being impacted by the pandemic as well. Every pharma company was suddenly scrambling to see what they could do to help their patients and sites.
“We immediately thought about that digital platform and how valuable it could be to patients who were under shelter in place orders,” says Metcalfe. “We thought about how we could take what was one event and make it into a much bigger experience for patient groups to connect and speak with other advocates outside of their therapeutic areas. We believed there were cancer advocacy groups that could learn from advocacy groups in arthritis, heart disease, or CNS. This platform could be an opportunity for groups to connect, communicate, and be more successful.”
BMS has a close relationship with patient advocacy groups and values their input in the study design process. Metcalfe notes many of the ideas on how to use the new platform, known as The COVID Advocacy Exchange, came from the advocacy groups themselves. BMS asked what they needed and what would be most valuable to them.
Creating A Dialogue
The platform put in place by BMS and GRYT Health is not a one-way transmission of data from BMS to the groups. Metcalfe stresses the overall goal was to create a stream of dialogue. The hope was to create a multidimensional information exchange between patients, caregivers, patient advocacy groups, pharma, and other key stakeholders. The information exchange would help those involved make and draw connections across their own therapeutic areas and focuses, and then understand and learn from other therapeutic areas.
“We see this as the next level in generating virtual experiences,” adds Metcalfe. “It’s difficult for anyone to sit in front of a computer and try to gather information on a disease or the patient experience by clicking on pages and links. We are creating an entirely new user experience where advocacy groups can use a multimedia platform and have virtual booths to share information in ways that are appealing and interesting. We want a true user experience, a dialogue, and a better way of forming connections.”
From the pharma perspective, the platform is also a way for them to hear and better understand the voice of the patient and their advocacy groups. Social media is increasingly used by patients to discover trusted and accurate sources of information. Patient groups also have many questions they need answered about treatments and the health of patients. Those needs have always existed, but have now been heightened with the spread of COVID-19.
“Initially the focus was on how everyone would be impacted by the virus,” says Metcalfe.
“Now the focus has shifted to what will happen in the next 12 months and how will we manage this in the long term. People are realizing that there aren't going to be any quick fixes. Since we are on a journey with patients, the platform will help us better understand their experience in the COVID era, hear their feedback, and know how we can better partner with them. Advocacy groups can help us understand how to better get medicines to patients and navigate visits to clinical sites. One resource in one place simplifies those challenges for advocacy groups.”
Strengthen Outreach To Diverse Patients
Patient diversity is another hot topic within clinical trials. The platform may help with that challenge as well. COVID has hit many communities very hard. That means a whole new crop of patients looking for information who may no longer have access to the nurses and doctors that were available prior to the pandemic. The ability to connect and have dialogue with diverse patient populations is paramount.
Pharma does not have the best reputation when it comes to the general public, and trust plays a factor in that. Having a dialogue with patients and patient advocacy groups could lead to a better image for pharma and eliminate some trust issues. But Metcalfe believes COVID is also playing a role.
The COVID pandemic suddenly has the American public looking to both government and the pharmaceutical industry to solve the crisis and lead us to a return to normalcy. A recent trust survey by Edelman shows the reputation of both government and pharma have improved in the eyes of the public. She believes COVID coverage is also providing the public with a greater understanding and appreciation of the clinical trial process. The intense media coverage of the search for a vaccine has certainly shined a light on the work pharma does. Still, patients put a lot of trust in advocacy groups, so anything the industry can do to facilitate those discussions will be a win for pharma, the advocacy groups, and the patients.
“We know patients want to hear from others who are facing the same issues they are,” states Metcalfe. “They want to have a dialogue with patients having the same ailment and are struggling to overcome the same challenges. For us, this was a way to connect people with the most trusted source of information for them, which is advocacy groups. They are now able to engage in a dialogue that was not possible before. COVID has certainly been a disruptor. But when it comes to understanding the concerns of patients, it has also been an accelerator. The information being exchanged is critical right now.”
BMS has already heard from many advocacy groups stating they love the platform and find the capabilities valuable. Going forward, the platform will go wherever the advocacy groups want it to go.
“One of our basic beliefs is that we should be building and creating things that advocacy groups need and find valuable,” adds Metcalfe. “We hope to learn from it, embrace what we find, and continually improve the program. We have an internal group called the Patient Expert Engagement Resource (PEER) that will advise us on the program and our initiatives. In the future we hope to continue to meet patients wherever they are on their journey and be a trusted resource for them.”
The cost of the running and maintaining the platform will be paid by BMS. As part of the company’s commitment to patients, BMS will keep registration and access free for all users. As the company looks to build upon and enhance the exchange, it is open to exploring collaborations with pharma companies and other organizations working to support patients. Anyone interested in learning more about potential opportunities should contact Jodi Hutchison-Sanford or Cathy Trzaskawka.