Why Patient Organizations Are No Summer Fling For Pharma
Pharma companies are forming long-term relationships with patient organizations, a move that is already bearing fruits for both parties.
Breaking news: Protestors from patient organizations gather en masse outside a pharmaceutical company’s headquarters wielding placards emblazoned with the words TRANSACTIONAL and TOKENISTIC.
Not too long ago, such an event might have been plausible given the pharma industry’s checkered history with patient organizations. The criticism often levelled at the industry is that patient groups are merely used as props in the marketing machinery; endorsing the latest product launch before being unceremoniously dropped.
Times have changed, however. In an ongoing bid to better engage and understand patients, pharma is truly partnering with patient organizations.
Novartis has been flying the flag for more meaningful collaborations for many years, says Veronica Foote, Head of Patient Relations & Communications Europe, Novartis Oncology. Underpinning this relationship is a long-term commitment, says Foote.
The company still works closely with patient groups in disease areas where they no longer have patented brands in, for example. The shared history and expertise of these groups makes them trusted advisories on topics far broader than the specific disease areas they are focused on.
It could be around raising awareness of a diagnosis and screening that is not necessarily in their given disease area. For example, patients are sometimes put onto chemo after being screened, when there is a much more targeted therapy available to them, they don’t even know what their tumor type is or what their biomarkers are, she says.
Novartis may collaborate with patient organizations purely on the merit of their “expertise and their ability to contribute to the broader healthcare systems debate”, says Foote.
Building a long-term relationship is predicated on trust and transparency, says Michelle Vichnin, Global Lead, Patient Advocacy and Strategic Alliances at Merck (MSD outside the US and Canada).
“There has to be a transparent approach to how we interact with organizations; transparency ensures that an appropriate interaction is taking place.”
We need to interact in a way that protects the independence of patient organizations and ensures the relationship operates within a legally compliant framework, adds Vichnin.
Alignment of core values and vision is central to the long-term relationship, she says. “We have an ethical framework that guides us. We want what's best for the patients, and the patient organization wants what's best for the patients, so it's a good fit.”
Trust keeps the relationship grounded, even when funding ebbs and flows, not to underplay the importance of financial backing: “If these groups are working on some incredibly innovative and interesting projects that will impact patient care and improve patient outcomes, often we try to find a way to fund them. It is ideal when multiple companies and stakeholders are engaged in funding an initiative.”
In it for the long run
Consulting patient organizations throughout the value chain, from early R&D right through to commercialization and beyond, is crucial to forging deeper, more fruitful partnerships. The value of patient involvement in R&D is increasingly recognized by all health stakeholders.
Novartis has started including patient experts on the global development board of some of its development programs, overseeing the early stages, such as clinical trial design and data monitoring, and may continue to broaden this engagement.
“Bringing in patient input early in the process is often key to making the necessary changes that improve a clinical trial,” says Foote.
A patient expert’s contribution may not always be considered but letting them know the reasons why is essential to maintaining a healthy and transparent relationship, adds Foote.
To facilitate a more meaningful dialogue, in 2013, Novartis Oncology established the European Patient Advocacy Leadership Council Oncology (EPALCO), a multi-stakeholder council comprised of the company’s European oncology senior management and patient advocates.
External participants include patients who are leaders within their given disease areas at a national or European level, and who represent a broad sweep of geographical areas. Council members were key active contributors in the development of the company’s New Commitment to Patient and Caregivers, which defines what patients and caregivers can expect from Novartis.
EPALCO formally convenes twice a year (although previously agreed topics can result in ongoing projects throughout the year) to address topics of mutual interest, with the aim of tangible results that improve the lives of patients.
“It’s about engaging the right people and having tangible outcomes that move the needle forward,” says Foote, who adds that ongoing dialogue with the patient community is a win-win for everyone. “They build up their expertise and challenge the hypothesis. We need people who are going to challenge the way we think and operate.”
Vichnin agrees. “Patients are passionate; they freely share their opinions and offer suggestions to improve the processes. We need to understand what the gaps in knowledge, clinical care, research, access and affordability are. We don't want to push out information all the time, we really need to pull it in and listen carefully to patients, patient organizations and caregivers/carers to learn what is important to them.”
They provide a unique perspective, she says. Patients tend to view their health and their disease through a longitudinal lens. “They can give us insights that are different and more in-depth than what the physicians can provide, although physicians’ perspectives are also very important.”
What's steering this shift?
Patient organizations are a proxy for the increasingly empowered patient, says Foote. The age of information continues to usher in a generation of better educated and expectant patients, who are challenging the status quo; whether it be through a simple visit to a GP or the development of their treatment.
“It is part of a virtuous circle because the more they know the more they want to know. The more they want to be involved and understand the consequences of not being involved, the more they want to be involved, even in the research and development process.”
The risk of misinformation has also never been greater. It is paramount that “patient organizations, communities and bloggers stay connected to the pharmaceutical industry and the wider healthcare system to make sure the information that is in in the public domain is accurate,” she says.
Creating an open dialogue with patient organizations can be a challenge at first, says Foote. Candid conversations could lead to a clash of ideas, which can surprise those that are new to the meetings.
However, when the conversation veers into controversial areas, it is important to make everyone feel comfortable, to moderate the debate to keep it relevant and to remember why we are all here, she says.
“We've tried to create a circle where the elephant in the room can be openly discussed in a candid and constructive way to foster mutual understanding of issues.”
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