The unique value of integrating the patient voice into the development process of therapies designed specifically for patients with rare diseases has always been of utmost importance for us at KJT. We also consider it crucial to acknowledge the broader context in which these patients navigate their journeys, interacting with providers, lab technicians, pharmacists, and payors. Each of these individuals in the care ecosystem holds an invaluable perspective that should be given a voice.
We collected a non-exhaustive list of key ways pharmaceutical and biopharma manufacturers can amplify the patient voice, ensuring patients with rare diseases can hear from others like themselves, and all stakeholders within the care ecosystem can gain access to information and resources that will further enhance overall patient care.
1. Map and Understand the Patient Journey. Mapping the patient journey, and identifying unmet needs, roadblocks, and areas of dissatisfaction is a necessary first step. Addressing these challenges is not a task solely for drug and device manufacturers. We recommend reaching out to each of the critical players – patients, their caregivers, providers, payors, and more – to gather their perspectives on the unique challenges faced in diagnosing and treating patients with rare diseases. Collecting input from the entire care ecosystem ensures you can identify, and address underlying issues at their source. Even if you can only reach a small number of patients, you can learn volumes about their journey, past and present, anticipated challenges, and how their treatments are performing relative to their initial expectations.
2. Share Insights Back to the Community. As we gather this critical information and engage in solution generation through new products, proposed policy changes, improved outreach, and education, we must bring all voices into the public domain. Instead of trying to better understand the patient voice solely for their own benefit, we recommend (and help) manufacturers broadcast insights generated from these multi-stakeholder research efforts back to the various populations that lent their voices to help improve care and access.
3. Facilitate Open Forums for Communication. Since patient populations with rare diseases are scarce, establishing platforms where patients and healthcare providers can share experiences, challenges, and success stories on a regular basis is instrumental in centering around the patient voice. These forums eliminate geographical barriers – they can be online portals, social media groups, or local in-person meetings where ongoing communication is encouraged, enabling continuous learning and adaptation. This holistic approach to gathering the patient voice, and the voice of others in the care ecosystem, provides rich insight to manufacturers, payors, providers, and most importantly, other patients with rare diseases.
Engaging with patient advocacy groups is also a critical component to amplifying the patient voice, bridging the gap between patients and manufacturers, helping to gather more comprehensive insights, and effectively disseminating new information and resources back to the patient community.
4. Personalize Care and Offer Support for Mental Wellbeing. Creating structured feedback systems involving patients and their caregivers can help seamlessly integrate these insights into the development and refinement of treatments and support services. For example, utilizing mobile apps can help track patient outcomes more effectively to personalize their care journey, facilitating quicker responses to patient needs and fostering a more responsive care environment.
Additionally, insights into motivations around therapy choice and switching could be leveraged and woven into messaging and communication campaigns to increase physician, payor, and patient awareness of potentially life-changing therapies and how they will fit their specific needs.
Unfortunately, addressing the psychological aspects of living with a rare disease is often overlooked. Mental health resources, such as counseling services, support groups, and stress management workshops, can significantly enhance the overall well-being of patients.
Our proven approach to integrating the voice of patients with rare diseases, and others in the care ecosystem, into critical points along the product lifecycle helps our clients improve the lives and outcomes of patients afflicted with rare diseases. We take pride in our part to help create and foster advances in drug and device therapies while bringing members of these rare disease communities together.
Author
Alex Castello, MBA
Marketing & Client Strategy, VP
Alex is a passionate insights marketer and seasoned healthcare researcher with over 15 years of experience delivering impactful business insights for life sciences companies. As part of KJT’s leadership team, Alex is focused on marketing and research solution development, with a goal to create the foundation for marketing excellence at KJT.
August 2024
Rare Disease Revolution Access, Advocacy, & Amplification of the Patient Voice
A panel discussion that bridges the worlds between insights, advertising, digital solutions, advocacy and more.
Focusing in on the patients with rare diseases, we cover the importance of representing and elevating the patient voice and provide solutions to overcome the unique hurdles of this space. We also discuss the future use of Generative AI, including considerations for ethical and responsible use when aiming to further understand, and communicate to, patients with rare diseases.
- Katy Palmer, PhD
- Ellen Gordon, PhD
- Lorna Weir (Elevate Healthcare & NORD)
- Stacey J. Wasserman (Medisafe)
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