This is a guest article and does not necessarily reflect the views and values of Impetus Digital. The original article was created by Esther Schorr from Patient Power. For more insights on how the power of patients is transforming healthcare, watch our recent Fireside Chat with Esther Schorr here.
Pharmaceutical companies often get a “bad rap” – charged with high drug costs and corporate greed. While there is work to be done in order to create financial and treatment parity in our US healthcare system, the issue is complex and there are many parties that need to work toward improvement together. At Patient Power, our mission to educate and empower cancer patients is what gets me up every morning. And it’s funded in part by “Big Pharma.”
In the early years of patient-powered journalism (the 1980’s), options for reaching patients and their care partners (who also need support and encouragement) were slim.
We produced videos and hoped they would be seen by all who needed the information. We produced written materials and bore the huge costs of printing and mailing with no way to follow up and find out if the information was even useful. We lacked the means to build a community of patients to support each other, share stories and resources, and provide advice, comfort, and hope to others on a similar journey. Most of all, connecting patients with leading experts, researchers, and knowledge about leading-edge treatments was not possible with any frequency or timeliness.
Things have changed.
Online channels make it infinitely easier to reach, educate, support and empower large communities of patients and their loved ones. And technological advances that allow people to easily consume information are helping us reach more individuals and connect them with the expert resources they need, and with each other.
In addition, pharmaceutical companies now recognize the value of patient education organizations and invest in the type of work we do. Through sponsorship agreements that give us editorial independence, we have been able to reach nearly a quarter-million patients and care partners a year. This support from Pharma is central to our efforts and we are ever grateful for it.
The “Odd Couple” of Pharma and Patient Advocates
So, why have pharmaceutical companies chosen to collaborate and support the work Patient Power does? Certainly the funds to focus solely on direct-to-consumer advertising (in the US) and marketing to healthcare professionals have been standard for a long time with big budgets behind them – but it has become clear that the impact of the kind of journalism we do, and the communities we build through our educational content are not accessible to pharma when they “go direct”. There are very clear and important reasons this synergy works – primarily to the benefit of patients.
Patients and their loved ones want unbiased, timely and well-rounded information. While pharmaceutical companies want to get information about their products and trials out to patients, they cannot credibly put product-specific information in the context of a wider range of treatment options. Each patient needs to fully understand and be able to discuss all protocols and treatment possibilities with their medical team – and a third party focused on delivering a holistic view creates contextual exposure for new and innovative treatment options.
Legalese can get in the way of health literacy – good journalism meets the audience where they are. Pharmaceutical companies are highly regulated in what they can say and how they can say it. The legal parameters that guide their communication often obscure understanding when it is needed most. Patient-powered journalists can provide impartial and clear information combined with relatable patient voices and expert insights. This ensures that the patient completely understands all options, including any potential side effects and long-term impacts.
Pharma needs supplemental channels to bring information about available financial support to the patients who need it most. There are tremendous racial, cultural, and economic disparities – at least in the US – in terms of access to care and focus of education and advocacy. There is not enough visibility into the additional funding Pharma offers to level the healthcare playing field – and while they are trying to fill this gap, they simply don’t allocate enough resources to raise awareness. Along with other educational and advocacy groups, Patient Power uses its broad reach to highlight and refer patients to often untapped resources.
While Pharma may not seem like an obvious ally, their support allows us to focus on our mission while maintaining complete editorial control. It’s a partnership that works. We need them to stay laser-focused on developing new treatments for all cancer types – and perhaps get over the goal line to a cure – while we educate and empower those same cancer patients, connecting them with the information they need and helping them take charge of their own healthcare decisions.
About Esther Schorr & Patient Power
Esther Schorr is the co-founder of Patient Power, a patient-centric, mission-driven media organization dedicated to providing actionable information and support to people affected by cancer. Patient Power’s mission is to help patients and care partners, from diagnosis on, approach cancer in a way that accelerates their journey to the best possible health. To learn more about Patient Power, visit their website or follow them on Facebook, Instagram, & Twitter.
About Impetus Digital
Impetus Digital is the spark behind sustained healthcare stakeholder communication, collaboration, education, and insight synthesis. Our best-in-class technology and professional services ensure that life science organizations around the world can easily and cost-effectively grow and prosper—from brand or idea discovery to development, commercialization, execution, and beyond—in collaboration with colleagues, customers, healthcare providers, payers, and patients.