Openness and Transparency Key
Problems begin when transparency and communication fail says EFPIA's Andie Powrie-Smith.
Patients benefit most when healthcare stakeholders work together to deliver better patient outcomes. For pharma, who develop medicines, working with patients’ organizations, who understand how a new compound fits into the existing treatment pathway, should be a natural choice. With an increasing recognition of the importance of patient input during R&D, setting up a collaboration with a partner who can deliver insights from the industry’s most important customer is a much-needed step toward patient-centricity.
How to approach them
Being open and transparent about what you’re looking to achieve in a partnership is key to developing a relationship with patients’ organizations. As ever, effective communication is a fundamental skill for pharma executives. To succeed, both sides need to understand what is happening, what are the objectives, and how this collaboration will affect patients.
“We need to recognize that a collaboration between patients’organizations and the industry is managed by a strict ethical framework that enables stakeholders to engage effectively on issues that are important to them,” said Andy Powrie-Smith, Communications Director, European Federation of Pharmaceutical Industries and Associations (EFPIA).
Stephen McMahon, Interim CEO, International Alliance of Patients’ Organizations (IAPO), elaborated: “The best approach to collaborating with patients’ organizations is to begin with agreed principles and values such as the Consensus Framework for Ethical Collaboration. Mutual principles at the start will provide the backbone for collaboration and keep both sides accountable and, importantly, maintain the domain of trust that exists between the patient and providers.”
Problems begin when transparency and communication fail. That’s when suspicions arise and a lack of trust can kill any relationship.”
The Consensus Framework was created to support partnerships that will deliver greater patient benefits and support high-quality patient care. It is built around four main principles: to put patients first; to support ethical research and innovation; to ensure independence and ethical conduct; to promote transparency and accountability. The Framework was established by IAPO, the International Council of Nurses, the International Federation of Pharmaceutical Manufacturers and Associations, the International Pharmaceutical Federation, and the World Medical Association.
Powrie-Smith added: “Problems begin when transparency and communication fail. That’s when suspicions arise and a lack of trust can kill any relationship.”
Why it’s important
Patients should be involved in decisions about their care and have a right to play a meaningful role in the development of treatments. Working with patients’ organizations can lead to a better understanding of patients’ needs, increase the impact of patient services and broaden an organization’s capacity to deliver better outcomes. Patients’ organizations are diverse and successful collaborations stretch across the spectrum, from R&D though development of adherence strategies to identifying wastage within the system.
“Patients’ organizations can provide pharma with insights into what it’s like to live with a particular condition,” said Powrie-Smith. “This has implications for drug development, but also for designing and implementing adherence-improving programs, and can be mutually beneficial.”
As patients become more empowered, they are more and more frequently coming together online changing how information about disease is shared and managed. “People living with long-term conditions have a very good idea about what they want and need,” Powrie-Smith pointed out. “Patients’ organizations, which often include families and caregivers, are very skilled at gathering that information, and can serve as a source of great expertise and support to drug developers.”
Reliable information
But the process also works the other way around, as patients’ organizations are a trusted source of information for patients themselves. Digital presence and online conversations are important areas for pharma to be engaged with, and patients’ organizations can provide a vessel for the wealth of knowledge the industry is sitting on, helping each patient take care of themselves better than before.
This is particularly important in the era of personalized medicine, where treatments are being tailored to individuals. “Pharma need to understand what it is that people find difficult about living with a particular condition; how each patient interacts with his or her medicines; how he or she takes the medicine; why he or she sometimes doesn’t take it; how that pill affects his or her quality of life, etc. All that information can help them address unmet need,” Powrie-Smith stressed.
Although patients’ organizations are not pharma’s customer, working with them has the potential to make healthcare more patient-centric. Rich in information, activists can deliver treatment- and disease-related insights that pharma need to meet their business objectives. At the same time, they can support pharma in their efforts to educate patients about the workings of their medications. At the end of the day, both parties strive for improved patient outcomes, and if you can combine understanding behind the medicine with appreciation of patient experience, you have something very powerful that can change healthcare efficacy.