Patient Opinion Leaders: A New Breed of Influencer
“Knowledgeable patients and caregivers who are passionate about sharing what they know with others”- that’s what defines patient opinion leaders (POLs). They don’t claim to have diagnostic skills and they don’t give medical advice. However, they do want to help others who are facing similar diagnoses and health challenges.
POLs aim to have a positive impact on many aspects of healthcare by speaking from the patient’s point of view on behalf of their community. – Source
Patient opinion leaders share experiences and communicate resourceful information to their communities, most often digitally as digital opinion leaders (DOLs) but sometimes not. In this way, they contribute to the social life of health information. Through their educating, sharing, and communication, patient opinion leaders influence decisions made and actions taken by patients, caregivers, and even healthcare professionals.
While healthcare and pharma are familiar with key opinion leaders (KOLs), most of whom are medical professionals, patient opinion leaders are a relatively new development. Patient opinion leaders earn their followers’ trust, not with medical credentials but through their educating, supporting, and leading efforts on digital platforms, like Facebook and blogs, where they create and amplify their message.
For this new breed of influencer in the healthcare and pharma landscape, what opportunities are there for patient opinion leaders to have an impact on the lives of other patients and caregivers? Can they influence the practices of medical professionals, industry, and pharma as well?
Let’s look at some examples.
Opportunities for Patient-Centered Impact
In its report, Patient Opinion Leaders: The new KOLs for pharma?, Pharmaphorum identified patient opinion leaders as being important to pharma (and, by extension the whole healthcare industry) because “their role is changing the social contract patients have with their physicians.”
Patient opinion leaders are valuable sources of feedback on how treatments and products work in the real world. They are able to speak on behalf of their communities, not only from first-hand experience within a condition area, but also because of their large following and community advocacy. More importantly, patient opinion leaders raise their followers’ expectations about what to anticipate from the healthcare system. In this way, patient opinion leaders are pushing healthcare toward more patient-centered practices.
POLs are well-positioned to influence HCPs to adopt patient-centered care practices. – Source
Paul Tunnah, the person who coined the term patient opinion leader, has identified four opportunities for patient opinion leaders to make an impact on patients, caregivers, and healthcare, itself.
These opportunities are:
- Having informed discussions with healthcare professionals
- Inspiring other patients
- Working with traditional patient advocacy organizations
- Amplifying the impact of digital health
Let’s dig a little deeper into each of these.
Opportunity #1: Having Informed Discussions with HCPs
Patient opinion leaders come to discussions with healthcare professionals (HCPs), whether in an examination room or in a professional setting, on a more equal footing than the traditional doctor-patient relationship. As a result of the knowledge they’ve amassed about their medical condition and their understanding of patient-centered healthcare, they are less likely to simply accept what a HCP says or does as gospel. Patient opinion leaders understand their condition at a deeper level and can speak on behalf of their communities.
POL Michelle Auerbach wrote about her response to a dismissive neurologist and how that influenced him to improve his bedside manner. – Source
Michelle Auerbach is a patient opinion leader who has written extensively about her experiences and exchanges with HCPs. She documented what happened when one HCP was dismissive of her neurological symptoms. Michelle was eventually diagnosed with stiff-person syndrome, a rare and hard-to-diagnose neurological disorder.
Michelle documented in a blog post how a neurologist turned her condition into a joke. She was undiagnosed at that point. Not only did the neurologist dismiss her symptoms, but he made a joke about her symptoms in front of the group of med students accompanying him on rounds that day. Michelle shared how being belittled by the neurologist cut her to the quick and led her to question her own symptoms. Another neurologist ultimately made the diagnosis of stiff-person syndrome and she started receiving treatment.
But that’s not where Michelle’s story ends. About a year after the consultation with the first neurologist, Michelle ran into that same doctor again at the hospital where she was being treated. She confronted the neurologist, reminding him how poorly he had treated her and informing him of her diagnosis. In a follow-up social media post Michelle shared that the neurologist remembered the consult, apologized for his behavior, and expressed regret.
We can’t always expect to receive such clear and complete closure, but by publishing her story to her community, Michelle raised the bar for patients, caregivers, and HCPs, letting them know that respectful treatment between doctors and patients should be expected.
In the same way that Michelle’s story encourages her community to have more confidence and knowledge in directing conversations with their HCPs, patient opinion leaders are able to influence patient behavior. WEGO Health conducted a study about the role of patient influencers and how they drive doctor conversations.
Opportunity #2: Inspiring Other Patients
Inspirational patient stories have always been told – patients who triumph over adversity; patients who, despite all the odds, live long, productive lives; patients who are successful athletes…
The difference with patient opinion leaders is that they are telling their own stories. They aren’t dramatic portrayals or composite characters. The patient opinion leader stories are from actual patients who have personally overcome the challenges presented by their illnesses. Industry is also coming to understand how effective a true story told in a true voice can be. The patient’s voice resonates more strongly than any actor portrayal.
POL Robert Hall has inspired patients by scaling seven of the world’s tallest mountains with IBD – Source
One example of an inspirational patient opinion leader is Robert Hill. Robert successfully climbed seven of the world’s tallest summits, including Mt. Everest, despite living with IBD. His multi-year climbing campaign included reaching the peaks of Mt. Kilimanjaro, Denali/Mt. McKinley, and Vinson Massif in Antarctica. Robert tells his personal story of going from barely being able to climb a set of stairs due to the debilitating pain of IBD to training for and scaling seven of the world’s most challenging peaks.
While few could match his accomplishments, Robert’s personal story inspires others. By seeing someone with the same illness conquering such dramatic challenges, it opens up the possibility of conquering the challenges posed by everyday living.
Opportunity #3: Working with Traditional Patient Advocacy Organizations
Historically, traditional Patient Advocacy Organizations (PAOs) have called on medical professionals and scientists to advocate and lobby for their interests. When four-out-of-five doctors say something, the public listens. When credentialed medical professionals and scientists speak at a hearing, policymakers listen.
Today, PAOs also engage with patient opinion leaders to amplify their messages, especially via social media. Patient opinion leaders provide an already-established and engaged following for the PAO to tap into. And nothing is more powerful or trustworthy than a patient or caregiver sharing with a policymaker their personal story about how an experience with a drug, medical device, or accepted healthcare practice helped or hurt them.
Patient ambassador programs are a common way PAOs engage patient opinion leaders. Individual patient opinion leaders partner with the PAO. Their stories are shared by the PAO at events, with the media, and in the PAO’s materials. Sometimes, patient opinion leaders themselves speak at events, hearing, and conferences. And, PAOs call upon patient opinion leaders to meet directly with legislators and other policymakers to discuss laws and regulations.
POLs are recruited to amplify PAOs’ messages, especially via social media. – Source
With the development of social media, some PAOs now have social media ambassador programs. These specialized programs focus on getting patient opinion leaders to spread the PAO’s message via social media. The PAO develops initiatives like the American Heart Association’s #WeAreHeart campaign. As part of this kind of campaign, the PAO provides patient opinion leaders with canned messages and premade graphics to share. These materials make it easy for the patient opinion leader to share and helps maintain the integrity of the message.
The key ingredient to the success of these educational campaigns is the trust factor. User-generated content that comes from patient opinion leaders can have a powerful impact in driving results for educational campaigns.
Opportunity #4: Amplifying the Impact of Digital Health
Since many patient opinion leaders are digital natives, it makes sense that they would share their experiences with digital health. Whether using an app or medical device, or sharing the experience with their communities on social media, it’s not much of a leap from one to the other. However, not all patient opinion leaders are content to simply promote solutions currently on the market.
A diagram of Nightscout’s CGM in the Cloud system – Source
One such group is the Nightscout project. Organized under the banner and hashtag of #WeAreNotWaiting, this group “patient engineered” their own solution. They developed a practical DIY system that enables remote monitoring of continuous glucose monitors (CGM) used by people with Type 1 diabetes, a system also referred to as CGM in the Cloud.
This group built the system using open-source software, a commercially available CGM, smartphone apps, and a commercially available smartwatch. They did it with volunteer labor. And, they completed development years ahead of any medical device company.
The impact of Nightscout goes far beyond giving parents and caregivers the peace of mind that comes from being able to remotely monitor the CGM of their child or loved one in real-time. As a result of the project and the conversations that grew up around it, both a major medical device company and a government agency changed their approach to the development of digital health devices and apps.
Dexcom released an open API for its CGM, stepping away from a tradition of a proprietary, closed data approach and clearing the way for collaborative innovation with third-party developers. It’s believed this was the first time a major FDA-approved medical device maker took this step.
The FDA established a pilot program to test out its Pre-Certification for Software program. This is seen as a revolutionary development that will result in a quicker approval process for digital health technologies.
These developments demonstrate the potential benefits to industry when they consider patient opinion leader expertise at every stage of the product life cycle. There’s a need for key insights and feedback earlier in the product development process from subject matter experts, many of whom are the patient opinion leaders willing to serve on patient leader advisory boards and insight groups.
The Impact of Patient Opinion Leaders
As these few examples show, patient opinion leaders are stepping up to the opportunities for impact. In today’s digital world, their impact is being felt beyond the traditional spheres of patient influence. Not only are they influencing decisions and actions of other patients and caregivers, but their influence is being felt by industry and policymakers as well.
What impact do you anticipate patient opinion leaders will have on your organization?
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