By Ella Balasa, patient expert and patient engagement consultant
At this point, we know that patients are not merely recipients of medical interventions; they should be active participants whose insights and experiences significantly shape the trajectory of research, development, post-market initiatives, and the acceleration of treatments.
Enabling meaningful patient contribution is becoming critical for healthcare and pharmaceutical industries. Industry, broadly speaking, values patient input in drug development as well as increasingly recognizes the importance of securing patient trust as patients are realizing future healthcare experiences are better when their perspectives are integrated. But it begs the question: Are companies just tagging on to the status quo of being “patient-centric” without fully analyzing the return on investment for their company?
What I mean is this: Is pharma developing patient engagement initiatives because that’s the expectation for doing right by patients without evaluating to what extent they actually deliver the best possible patient outcomes and improve the profitability of a company? If little analysis is done on the benefits of patient engagement, why? And will we continue to see sustained investment and further patient collaboration? Or will they decline as the novelty dims?
These looming questions dawned on me after frequenting the pharma and patient advocacy conference circuit as a speaker and attendee over the last few years. I’ve become more aware of the circuitous — and very much theoretical — panel conversations surrounding the involvement of patients in drug development.
This is not to say I am not pleased to see more patients, including myself, be a part of these conversations. But both industry and patient representatives are repeating ourselves. We are talking about how patient involvement can facilitate improved patient experiences and outcomes in trial participation and can improve the relationships with the healthcare industry. But less often our conversations are grounded in examples of how it has been done and what tangible impact it has had. While I don’t mean to diminish the value in these conversations, and increased patient attendance in conferences is a significant step forward that’s by no means overlooked, are there valuable learnings coming from them?
There is a pressing need for more comprehensive discussion and more case study presentations that showcase successful and realistic patient engagement implementations throughout various phases of drug development. When more of industry is showing others how something is done and the value that it brings, the greater the adoption will be. These case studies should span the entire spectrum of pharmaceutical initiatives, from early research phases to post-market engagement. We are barely scratching the surface of explaining the methodology, the structure, and the execution of patient engagement in such examples. Case studies should illuminate instances where patient preferences and needs were incorporated into the development process, leading to more patient-centric products, more patient uptake, and greater fill rates. They should highlight instances where patient engagement strategies impacted trial outcomes and accelerated the development timeline, thereby saving millions in a budget. But since such examples utilizing data evidence are presented infrequently at conferences and in external communications, are we to believe that the value of patient engagement initiatives is not being frequently quantified?
"We know that this sector is slow to change. And though innovation is the foundation of the healthcare industry, in this regard, each company is looking to the others for proof that investing in patient engagement is worth it."
Why This Is Happening And What To Do
Perhaps we are lacking an industry framework for data collection to quantify the real value of measuring patient engagement. I believe this is one of the two distinct reasons why conversations and publications about patient engagement learnings are not in greater abundance.
In order for true patient engagement initiatives to attract more buy in and really take off, pharma as a whole has to be shown the value of these initiatives. We know that this sector is slow to change. And though innovation is the foundation of the healthcare industry, in this regard, each company is looking to the others for proof that investing in patient engagement is worth it. Because a pharmaceutical company is a business at its core, data analysis is the only way by which to show its leaders how patient engagement initiatives are adding value, like reducing the timeline to market and reducing the overhead cost of the clinical trial. However, the up-front cost of creating a framework to conduct these measurements is a likely hurdle. Therefore, I urge companies to invest in tracking patient engagement efforts internally and promoting them externally in industry publications and at healthcare conferences so that fellow pharmas can see this information and follow suit. It’s important to discuss this up-front investment as well as initiatives that have failed and understand why, so that others can learn from the mistakes.
It is important to acknowledge that this isn’t a barren landscape; there has been some evidenced collaboration in developing frameworks and quantifying patient engagement value in literature reviews1 that have mapped quantitative and qualitative methods to evaluate benefits and costs of patient engagement, as well as with an initiative by the Clinical Trials Transformation Initiative that assessed the financial value of patient engagement.2,3 And organizations such as the Milken Institute have also assembled industry experts to discuss tools that calculate appropriate renumeration for patients’ R&D participation.4
Transparency With Patients
The second possible reason why these comprehensive conversations aren’t happening in the conference circuit is that, as more patients are integrated into conferences, committees, and projects, there grows a fear of patients’ impressions of industry.
Because of patients’ historical mistrust of the pharma industry, as more patients take part in conferences and panel conversations, the less comfortable industry may feel in talking about the bottom line. Conversations are more abstract about how patient input is valued and how it’s necessary to improve people’s lives — showcasing pharma’s altruism without tying it to cost considerations. This is a disservice to the momentum of patient engagement adoption. The more patient engagement is sugar coated around patients (and not tied to profitability), the less likely industry is learning from others’ successes and failures and seeing the overall value of patient collaboration in accelerating trials and reducing costs — the primary focus of operations.
By teetering on this line of sensitivity, pharma is not being transparent and forthright with patients. In a way, it can be patronizing. Patients are people who have jobs, know the value of money, and understand economics, so open dialogue is paramount.
Changing The Narratives
Laying the groundwork for greater adoption of meaningful patient engagement can be done by documenting patient engagement initiatives and disseminating the learnings at industry conferences and within publications. These publications should present the evidence base for patient involvement to serve as an example for others, and thereby convince leadership of its importance and to secure resources and budget. This shouldn’t be a competitive space; the mutual goal is to improve patients’ experiences while increasing profitability.
Additionally, pharmas that partner with the increasing number of organizations involved in expanding patient engagement frameworks and publications support the development of a community for shared learning. The Patient Engagement Open Forum, for example, is a multi-stakeholder collaboration for thought leaders in industry to come together to create real solutions for the future of patient engagement. The International Society for Medical Publication Professionals (ISMPP) Patient Engagement Taskforce, of which I am a part, is actively working to expand the development of patient engagement publications to translate the value for ultimately greater adoption.
It's also important to consider patients as both strategic partners and an audience. Within the conference space, the Conference Forum’s Patients as Partners conference is one that has exemplified a commitment to integrating patient voices to drive greater efficiencies in clinical research. In the conference’s roundtable discussions, patients are actively involved in an environment of idea sharing where seamless incorporation of patient engagement case studies within industry is conveyed to an industry and patient audience among whom trust and credibility have long been established.
Lastly, moving forward, let’s make sure that the patients that are invited onto conference panels are also the patients whose perspectives are integrated into the initiatives that are being outlined in the discussion — a representation of true collaboration.
The pharmaceutical and healthcare industries are at a transformative juncture where patient engagement can be not just a buzzword but a driving force for positive change. Patient attendance and involvement in conferences and co-creation in publications signify a significant shift toward a more inclusive and patient-centered approach. However, to truly understand the impact of patient engagement and to foster greater adoption and change, industry needs to develop frameworks for measuring patient engagement value and share more comprehensive case studies that detail successful implementations throughout the pharmaceutical life cycle. By highlighting industry examples, we can inspire a collective commitment to making patient voices an integral part of every facet of healthcare and solidify its value to business and to patients’ lives.
About The Author:
Ella Balasa is a patient advocate, consultant, and a person living with cystic fibrosis. She has committed her time to empowering patients and advancing healthcare strategies. She speaks publicly about the value of patient perspective and has a passion for distilling clinical information for patient communities. Through opportunities working with healthcare organizations on content strategy, writing, speaking, clinical trial development, and sharing the patient experience, she aims to affect the healthcare landscape by raising awareness of rare diseases, promoting self-advocacy to patients, and offering valuable insights to organizations. Examples of her collaborations and experiences can be found at www.ellabalasa.com. She can be contacted via LinkedIn or email at firstname.lastname@example.org