Beyond Medicines: Pharma's Journey with Patient Family Advisory Councils

Deborah Ventz-Migneco, owner and founder of PFACoach

Within the healthcare and life sciences sectors, the patient/consumer is the driving force and primary influencer, shaping our comprehension of the perception of care and services. Understanding how patients see and experience services is crucial. By including patient and family feedback in our discussions, we bring patient-centered care to life, making it a natural part of how organizations operate.

Beyond trends: the timeless significance of patient-centered care

Patient-centered care transforms healthcare and the life sciences by influencing policies, programs, treatment and care design, and daily staff interactions and operations. Embracing and committing to a culture of patient-centered care can lead to improved health outcomes for patients by elevating patient engagement, but also ensures more efficient resource allocation, ultimately leading to greater quality and clinical relevance and higher satisfaction and engagement for both patients and their families.¹ In a 2022 study focusing on the customer experience in the pharmaceutical industry, a significant misalignment exists between how the pharmaceutical industry provides information and services to patients and the preferences of patients in receiving them. Moreover, the current use of available channels by pharma companies does not adequately meet patient needs.² As companies strive to become more patient-centric, there are crucial opportunities to improve by better understanding and addressing patients' expectations through enhanced listening.

Such significance of prioritizing patient-centered care has prompted healthcare and pharmaceutical organizations to acknowledge the necessity of appointing Chief Patient Officers (CPO) to executive roles, as highlighted by Stephen Brengle in a previous article on Pharmaceutical Executive. This role lays the groundwork for strategic insight and planning, enabling the incorporation and investment of the patient's voice. In this pivotal role, the emphasis is on utilizing patient & consumer perceptions and expectations to align with the objectives and innovations of healthcare and pharmaceutical organizations. The overarching aim is to elevate patient-centered care and patient engagement and enhance clinical outcomes. Thus, one such initiative often spearheaded by the CPO is to initiate and establish Patient Family Advisory Councils (PFACs).

Shaping tomorrow’s care and services: the strategic value of PFACs

PFACs began nearly four decades ago and have been influential in shaping organizational cultures and revealing blind spots in processes and systems through the shared narratives of patients and families. Healthcare organizations, medical practices, and pharmaceutical companies are recognizing the importance of involving patients in service design and delivery, which is viewed as equally as important (if not more) than the organization’s viability and profitability. There is now a shift towards prioritizing patient-centric approaches, challenging the traditional focus on business models. Increasingly, organizations are actively listening to patients, aligning efforts with their preferences and desires. This shift places patient voices at the forefront of collaborative innovation and drives excellence in service and performance.

The active engagement of patients and the public in research is increasingly recognized as a fundamental aspect of sound research practice. The research community acknowledges individuals with lived experience as valuable stakeholders within the research process. Every stakeholder engaged in a project possesses the expertise, whether derived from lived experiences or professional backgrounds. Patients and caregivers contribute unique insights into their condition, thereby complementing the expertise of healthcare professionals, researchers, and other collaborators. Patients and caregivers arguably play the most pivotal role in health research. Their engagement is driven by a commitment to advancing research that addresses their specific needs. Through the assessment of the impact of patient involvement and the establishment of mechanisms to showcase their contributions, patients and caregivers experience a sense of value. This recognition fosters their continued participation, while also emphasizing to other stakeholders the enhanced value of collaborative partnerships.³

Humanizing research: how patient family advisory councils influence the life sciences

The Patient-Centered Outcomes Research Institute (PCORI) describes research engagement as the significant involvement of patients, caregivers, clinicians, insurers, and other stakeholders at every stage of the research process—from the planning phase through conducting the study to disseminating the study results. Established in 2010 as part of the Affordable Care Act, the PCORI distinguishes itself for its commitment to involving patients and various stakeholders in clinical research. With a unique focus on clinical research, PCORI specifically includes stakeholders most directly affected by research outcomes in health decision-making. PCORI characterizes research engagement as the substantial participation of patients, caregivers, clinicians, insurers, and other stakeholders within the healthcare community at every stage of the research process—from study planning and execution to the dissemination of study results. This approach, according to PCORI, seeks to make research more patient-centered, relevant, and valuable. The active participation of these partners throughout the entire study is anticipated to enhance the utilization and adoption of research results.⁴ One of the key outcomes of involving community members in research is the establishment of trust and mutual respect between researchers and the lay public, particularly focusing on populations that are underrepresented in research.

In support of such a collaborative partnership, a number of patient advisory groups have established productive relationships within pharmaceutical organizations, such as the Cystic Fibrosis Foundation, the COPD Foundation, and the Multiple Myeloma Research Foundation. An example of a beneficial relationship was the establishment of the cystic fibrosis patient registry and the Multiple Myeloma Research Consortium, to name just a few. As illustrated by these examples, patient advocacy organizations play a crucial and strategic role in uniting diverse stakeholders (regulatory agencies, industry, academia, national research institutes, and patients). Their contribution is pivotal in establishing an environment that can support research and drug development efficiently and effectively.⁵

Engaging patients in collaborative efforts with researchers is a valuable and distinctive method of acquiring knowledge. This collaborative approach enhances the ethical standards, rigor, and relevance of research processes and findings. Additionally, it contributes to improvements in research design and conduct, ultimately increasing the relevance of findings to the studied population.⁶

The journey may not be a smooth one

An early challenge for organizations and CPOs endeavoring to incorporate patient/consumer involvement and feedback via PFACs is accurately defining the specific individuals who represent the patient or consumer for the purpose of engagement. One approach to categorizing consumers is on a scale of increasing collectivity, including individuals, groups with shared services, communities of interest (like population groups), and the general public.⁷

Consumer involvement is a complex and multifaceted phenomenon, encompassing differences in degrees, levels, components, types, and methods of intervention. Furthermore, various participants may be involved, and the levels of openness, consciousness, and formality can vary. Addressing this acknowledgment is advised through the collaboration of the organization’s CPO with the executive team. While the journey may be long and arduous, it is notably worth the collaboration and exploration of the patient’s perceptions of their own healthcare journey.

Deborah Ventz-Migneco, owner and founder of PFACoach

References

1. Boote, J., Telford, R., & Cooper, C. (2002). Consumer involvement in health research: a review and research agenda. Health Policy, 61, 213-236.
2. Tyer, D., Tongeren, V., & Price, H. (2022). The State of Customer Experience in the Pharmaceutical Industry, 2022: Patient Interactions. DT Consulting.
3. Coleman, C., Fulton, O., Boyd, J., Williams, C., Powell, Z., Brightling, C., Powell, P. (2023). Principles of patient partnership: integrating patient perspectives into ERS Clinical Research Collaborations. Breathe, 19, 1-8. doi:10.1183/20734735.0159-2022
4. Rawl, S., Bailey, S., Cork, B., Fields, M., Griffin, T., Haunert, L., Carter-Harris, L. (2021). Partnering to increase colorectal cancer screenings: perspectives of community advisory board members. West J Nurs Res., 43(10), 1-14. doi:10.1177/01939445921993174
5. Rose, D. M., Marshall, R., & Surber, M. W. (2015). Pharmaceutical industry, academia and patient advocacy organizations: What is the recipe for synergic (win-win-win) collaborations? Respirology, 20(2), 185-191. doi:10.1111/resp.12458
6. Chiu, C., Mitchell, T., & Fitch, M. (2013). From patient to participant: enhancing the validity and ethics of cancer research through participatory research. Journal of Cancer Education, 28, 237-246. doi:10.1007/s13187-013-0464-2
7. Boote, J., Telford, R., & Cooper, C. (2002). Consumer involvement in health research: a review and research agenda. Health Policy, 61, 213-236.