Patient engagement with and use of new health care technologies and innovations is key to driving the adoption and scale of these promising solutions. Join this discussion to hear from patients, care partners, physicians, advocates and others all working to ensure the patient voice is represented in the development and design of digital health tools. You’ll learn about what matters to patients, what their expectations are as both collaborators and patients, and what areas of health care are the ripest for disruption from their perspective!
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For me, a patient leader is someone who uses their lived experience to make change. To challenge the norm, to ask the questions nobody wants to ask (or answer), and an individual who isn't scared of speaking out. That said, we're all patient leaders in some form - and we all should be respected for that. Everyone is on a unique journey - some at the very start, some further down the line. We should nurture and empower people to become leaders - using their experiences to inspire change.
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depends what you mean by patient leader - leading their own health? leading a patient council? Organizing a community? Any patient can potentially lead from where they are. Its hard job to make that easier for them.
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Simon, I like the notion of "making change". Whether it's being proactive in our own care and participating in shared decision making and participatory medicine, to advocating for a community of a particular disease state, to participating in speaking engagements that amplify barriers and unmet needs, there is a will to drive change, a strength, a demand or many demands.
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Dr Boissy, you make an excellent point: there isn't 1 type of patient leader or role, but rather many. There's truly an opportunity to lead and be proactive at any scale. It is a hard job no matter the scale too. I would love to see every patient empowered with the information and tools they need to be leaders of their own care. For the patients who are interested and willing to be more proactive, connecting the dots for other patients with respect to driving access to credible information and peer-to-peer support is key.
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agreed - you know as well as anyone though, that patients need to be empowered with access to the data in a timely fashion, actual costs of tests and procedures, digital platforms that engage across settings, and easy painless access. Then they can have what they need to advocate most effectively.
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100%! It's next to impossible to coordinate one's care if you have a chronic illness or multiple co-morbidities.
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Over the past few decades I've noticed the term Patient Leader evolve from just inside hospitals and other health offices to the outside realm and with a push from Social Media.
Patient Leader definition in today's term would be multi-faceted.
One who has lived experience,
Takes the knowledge and know how from said experience,
Help others who may not be strong enough to represent themselves, or those who have no idea how the health system works and/or provide credible research and evidence to help others who may be struggling in their own health journey.
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Lisa, great observations and insights on the evolution of the coined term "patient leader". I agree that there are so many advocates and connected patients on social media. So many stakeholders of the healthcare ecosystem are NOT on social media and are missing significant opportunities to meet patients where they are. These patient leaders are driving peer-to-peer support at lightening speed.
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So very true regarding those missing out in the social media arena. So much information, exchanges, collaborations and education are a huge part of social media nowadays. Perhaps a 21st century Patient Leader can help meld the two for broader awareness?
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Many companies and organizations, especially in pharma, balk at any interactions with patients on social media, stating its a definite red line with compliance, legal, regulatory, etc. I always suggest having patients come in and talk to these particular departments. Break down the silos, find transparent, collaborative ways to ethically partner with patients. It's the only way forward.
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It really made a huge difference when I took my diagnosis sheets and research to my pharmacists so they could see why I need the meds I take and how they’re being taken. ✨
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Simon, I couldn't agree more and it's all about using your experience to better serve others within the community. As mentioned, it is someone who challenges the norm and stands up for the betterment of their community. I think everyone has the potential to be a great patient leader, but it starts with asking yourself how you want to make a positive change in your community.
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Find your why and hit the accelerator! I love asking patients, caregivers, advocates, innovators what their "why" is. The passion that drives the need for change is often so inspiring and can be infectious and uplifting.
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Some great discussions! In a talk I delivered earlier this week, I compared 'patient/carer advocates/leaders' to clinical 'key opinion leaders' (KOLs). They are people with an active interest/experience in a given area who are respected and trusted within their communities. They are influencers, and speak up on behalf of communities. Of course, there are a huge spectrum of patient/carer leaders, and everyone should be encouraged and empowered to be whatever they want to be.