Written on Thursday 11th May 2023
Aligning with the ISMPP 2023 theme, Gavin Jones, Global Lead Patient Centricity at OPEN Health, had the pleasure of facilitating an expert panel discussion on the topic of breaking down barriers to “patient-first” approaches. After 2 days of insight and experience sharing on how to incorporate the patient voice into research and publications, the objective of this session was to explore the fundamentals of effective patient engagement. The panel hoped that, by better understanding these fundamentals, the audience would feel informed and confident to apply them when engaging patient communities in publications processes. This in turn could lead to improved partnerships and outcomes based on greater empathy and trust.
Joining Gavin on stage were a group of inspiring experts bringing their perspectives from across patient advocacy, engagement, and scientific communications. The panel comprised:
To frame the discussion, the panel had aligned on five foundations of effective patient engagement. Here is a summary of the foundation-led discussions about how to deliver improved partnerships between pharmaceutical professionals and patient communities.
Foundation 1: Recognize the value of patient engagement
The panel acknowledged the multitude of ways in which patient participation and insight can improve outcomes in research and communications and that Medical Affairs is well placed to conceptualize patient involvement throughout the drug development pathway. If patient participation and insight is truly valued, then this must be recognized in fair market value remuneration as it is with other stakeholder groups, such as healthcare professionals.
Foundation 2: Leading with a transparency of intent
The key messages at this point of the discussion were about ensuring that we always have a two-way dialogue with the patient communities with which we are looking to partner. Firstly, we need to do our homework and understand their organization and key priorities. Next, we must be prepared to listen thoughtfully to their priorities and consider how we can support their goals in a way that is commensurate with our program of development. To ensure we avoid transactional relationships, we should follow up on their input to demonstrate how we have acted upon it and maintain a regular exchange of dialogue.
Foundation 3: Enabling health and process literacy
Firstly, the panel recommends gaining an understanding of where the unmet needs sit within a specific patient community. When this is established, provide useful resources that assist understanding and get to the root of science (e.g., understanding clinical trials or how to read an abstract). Plain language summaries are considered to be essential resources to educate patients and ensure that the content is accessible, engaging, and understandable. Given that the primary source of education for patients is often their physician, then resources must be designed to assist consultations and shared decision-making.
Foundation 4: Maintaining compliance and independence
It was agreed by the panel that these foundations can be coupled together to build trusted partnerships. In terms of maintaining compliance, it is important to engage compliance and legal teams early, so that they can understand the “why” and help you to figure out the “how”. Programs should be developed based on unbiased evidence and grounded in transparency. There are some excellent examples of multi-company collaboration with patient advocacy groups that provide a lot of learnings. Guardrails will be important as the range of programs increases, and the programs in which patients and creators understand the “why” behind the rules will be more effective.
Foundation 5: Successful co-creation
Once again, thoughtful listening is an important factor in effective co-creation with patient communities. Involve patients from the very start through collaboration with internal advocacy colleagues and ensure that they are treated as project co-leads, shaping the project with you. Truly capturing the patient voice is hugely satisfying and requires diligent research (e.g., understanding the disease state and burden) prior to engagement. It is also important to ensure that results are shared with the patient community so they can use the insights within their own initiatives.
In closing the panel discussion, Gavin focused on what he saw as the essential element to effective patient engagement. He described how we need to lead dialogue and collaboration with humanity. Approaching partnerships with patient communities with thought, empathy, and compassion will lead to more effective relationships with improved trust and transparency and, ultimately, better outcomes.
To learn more about best practices for the inclusion of the patient voice in the publication process and the importance of building trusted relationships with patient communities, read our whitepaper "Embracing the Patient Voice Within Publications":
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