The Evolving Landscape of Patient Advocacy

Updated: May 26


Interview with Jennifer Cain Birkmose (Vice President, Global Head of Patient Access and Community Engagement, Sobi), and Valeria Nicoli-Carr (Patient Engagement Specialist)

The patient advocacy landscape within the pharmaceutical industry is both vast and evolving; now an integrated, full-fledged corporate function, with roles in patient partnership and engagement growing in numbers and importance. In this roundtable, we hear from two industry thought leaders who share their ideas on how to build and maintain synergy between pharma and patients, as well as what the future holds for this prosperous union.


What was it about a role within patient advocacy that first piqued your interest?


Birkmose: I am fortunate to have grown up in a family of healthcare professionals and advocates who lived and breathed the patient experience I was immersed in from childhood. I witnessed first-hand the importance of having compassion for patients, putting their perspectives first, and acting with speed on their behalf. This compassion and commitment translated directly into daily impact on patients’ lives. My mother was also the chairwoman of the American Diabetes Association and I supported her in creating the UN resolution that launched World Diabetes Day.


Nicoli-Carr: I have always been passionate about co-creating solutions for patients with patients. It is extremely rewarding to design new solutions while reinventing the way that pharma companies engage with patients, building more meaningful and tailored processes. It is a privilege to facilitate both conversations and practical solutions that have such a tremendous impact. Patients are at the centre of a transformation that is changing every aspect of the pharmaceutical process, from concept design to market launch. Patients are no longer the receiver of a scientifically tested drug prescribed by a trusted HCP, but the key stakeholder of the whole process.


How should a pharma company ensure it is working with the most appropriate Patient Advocacy Group (PAG)? What should the research and audit process look like?


Birkmose: Selecting the most appropriate PAG to partner with is determined by what issue you are solving. For example, is this a clinical trial design question where you need to verify whether the selected end points and patient-reported outcomes are correct and truly reflect patients’ experiences? Are you seeking to co-create real-world evidence data generation activities to raise awareness of patients’ burden of illness? Or perhaps you are co-designing a disease awareness or patient support programme in your country. The European Patients’ Academy on Therapeutic Innovation (EUPATI) has been a pioneer in answering the call from patients of ‘no decisions about me, without me’. They have created a lifecycle map of how to partner with patient organisations.


Nicoli-Carr: There is not a one-size-fits-all process for how a pharma company can ensure they are working with the most appropriate PAG. Pharma companies that have an inclusive approach often reach out to different patient groups on an international scale, from small groups to umbrella organisations. When dealing with a variety of groups, the challenge often faced is how to reach out to organisations that are geographically spread out and may have different priorities on their agenda. Successful pharma companies are proactive in building relationships with patient groups, engaging with them through the creation of ‘family days’, educational projects, or simply collaborating to truly understand their priorities.


What ecosystems need to be in place to ensure collaborations between pharma companies and PAGs deliver the most value for patients?


Birkmose: The key to encouraging an ecosystem of collaboration between patients and pharma requires getting serious about a mindset of partnership. This starts with being open and willing to truly listen and act according to the needs and voices of our patients. A big part of that open conversation is deconstructing the jargon-laden language of the industry into a straightforward rhetoric that is accessible. Secondly, a framework of compliance must underpin all interactions with PAGs, so internal company partnership between legal, R&D, medical, and patient engagement is essential.


Nicoli-Carr: It is never too early to engage with PAGs. I have worked with many patients who are willing to provide solutions that go on to benefit a variety of others. Often, patients face common challenges regardless of their specific disease. The keyword for improving health outcomes should be ‘inclusivity’. From a pharma perspective, this means reaching out to patient groups that represent voices who are traditionally less heard, ignored, or excluded. If a pharma company is working on a specific rare disease, reaching out to the umbrella patient group organisation while engaging directly with patients who are less likely to be part of any patient group (for social, geographical, and/or cultural reasons) can provide diverse and valuable insights. These will not only be from patients suffering from that specific condition but will also show how similar conditions are affecting other patients and their families on a wider scale.


How is the relationship between pharma companies and PAGs likely to evolve and grow in the future?


Birkmose: We are experiencing a massive technology shift in healthcare. The rise of digitisation, the distribution of telemedicine, augmented reality, and virtual reality, have all led to the democratisation of health information and healthcare services for patients. As the healthcare systems become more decentralised, even location agnostic, the experience and voice of the patient will have increasing power and influence. This democratised patient voice means that engaging PAGs can no longer be viewed as a ‘nice to have’; it is an essential component of drug development and healthcare innovation. This empowerment combined with a mindset of partnership will put patients in the driver’s seat of drug development and healthcare service planning. I am excited about this new opportunity and what it may mean for patients and the sustainability of healthcare systems.


Nicoli-Carr: The goal of patient advocacy, and more broadly patient engagement, is shifting towards creating health equity and social justice and highlighting a variety of voices and a broader perspective in health research. In the future, there will be a growing focus on transparency and regulations. Many groups already have available policies that state their financial relationships with pharma companies. In the future, I can imagine how the legislation will evolve to regulate the abundance of information available while safeguarding individual interests and minorities. The digitalisation era is also offering patients a new way to be heard and seen – patients can now contact their local member of parliament or senator to make their needs visible and create awareness at a national level. Over the course of my career, I have seen how building relationships with PAGs has evolved from a subordinate priority to an integral part of the process. This evolution is only destined to continue gaining momentum.