Letting The Patient Voice Take Root Within A Company

By Brenda Snow

Patient engagement is becoming increasingly essential and fruitful in many indications, but still remains uneven and disconnected across our industry. Industry faces challenges such as ineffective clinical programs and increasing evidence requirements, while patients — particularly those living with rare cancers and other rare diseases — perceive either a lack of relevant results and consequently, a lack of therapeutic options, or else escalating financial burdens and adherence challenges placed on them and their families. There is hence a strong need on both sides for more intense, and particularly more productive interaction.

Historically, life science companies were either business-driven or science-focused. In the past decade that has changed significantly, and in the current market, companies are increasingly thought of as "patient-centric" and driven by the needs and the voice of the patient. This is not just a convenient branding statement, but an action in thought, word and deed by a growing number of biopharmaceutical companies that recognize the very real value of including patients early and often during the development of clinical program, and making sure that the patient voice is both heard and acted upon in all corners of the business. Undergirding this paradigm shift — and a key element of modern biopharmaceutical leadership — is the trend of establishing Patient Leadership Councils (PLCs) within life science companies and other healthcare organizations. The aim is for the patient voice not just to be heard within the company but also to let it take root and become part of the company’s organizational setup.

A patient voice that speaks with authority

Progress toward an accepted and collective working infrastructure for patient engagement requires a transparent, agnostic, and holistic approach by all involved. The goal is the establishment of an open partnership that can identify what each party has to offer, as well as where the limitations and areas of opportunity lay. From this partnership should eventually germinate a more formalized and sustained program has the capability to grow and change. A PLC is one form (or name) such an initiative can take. Such a long-term program creates the opportunity for an industry partner to ensure that patients and their needs are entrenched in the heart of drug development from discovery to commercialization and beyond.

A PLC is a coalition of patients and patient advocates that may be organized from the ranks of external patient opinion leaders or from a life science company's branded or unbranded patient ambassador program. A PLC provides guidance and input on the direction of the drug development process, market access, and key patient communications programs. In establishing a PLC, a company offers a clear commitment to its patients. Through this initiative the business and clinical leadership is complemented by a patient voice that speaks with authority and from their personal experience, to ensure that all aspects of business and science are created with one singular focus: To improve the patient experience and ensure the voices of patients and families are a central consideration in the strategic direction and offerings of the organization. PLC members offer commentary, feedback, and guidance on healthcare topics impacting that company. This may include: regulatory policy, medicine adherence, access, clinical trials, and drug development processes and protocols. PLCs are formed so that they may offer insight into:

• the effectiveness of current methods of communicating information about a particular disease
• the reality of living with a specific disease
• the evolving patient community — especially a possible new national network of support groups
• identification and assessment of opportunities to increase education and awareness of the disease in question
• outreach programs for underserved populations, including veterans, African Americans and other minorities
• the perception and perceived role of the pharmaceutical industry as it relates to Patient Advocacy

An integral part of the decision-making process

In the past, focus groups and advisory boards served as similar patient engagement outfits. Focus groups tend to be ad-hoc, short-term assemblies of interested stakeholders that are formed to provide one-off guidance on tactical matters, such as packaging design for medical devices, product administration for therapeutics, or informational needs that are important to patients that are essential for their understanding and use of a product.  PLCs have more in common with advisory boards in that they’re both more long-term and strategically oriented. However, in contrast to an advisory board, a PLC would play a more permanent and authoritative role as an integral part of the company’s decision-making process, rather than as an external consultative panel.

PLCs share information and ideas with the company leadership (executive, marketing, medical affairs, compliance, and communications), with the expectation that each of these internal stakeholders will take informed action to enhance patient-related company goals, ethics, and best business practices. With an increasing number of companies describing themselves as patient-centric, we are poised to see more and more life sciences companies evolving their existing patient engagement initiative toward creating internal PLC resources.

At the root of the drug development industry is the creation of medicines that improve the health and life of patients. Both sides of the industry-advocacy equation subscribe to the notion that patient engagement is the centerpiece of this paradigm. Fueled by a new level of engagement, an increasing number and scope of patient-based initiatives exist; yet current patient involvement supporting drug development is disconnected, and even in the current market mostly relegated to late-stage and/or post-launch involvement. Establishing a PLC allows patients and their biopharmaceutical counterparts to establish strategic working collaborations throughout the entire development and launch process. This process does not only provide a strategic direction and platform from which to steer business and science, but also presents opportunities to create novel and innovative programs that will benefit both industry and patients.

Brenda Snow is founder and CEO of Snow Companies, which provides patient-focused initiatives including patient ambassador programs, call center support, and patient leadership councils.