By Charline Coquerel, Sherina Kuruvilla, and Lukas Eichmann, Novo Nordisk
“Patients aren’t stupid. [But] They are not educated. I think that what you are trying to do is to get your information out in some kind of form that patients can understand.” – Al Voss, DEEP member, DAB 2019 participant
At Novo Nordisk, we believe it takes a multi-stakeholder approach to develop new treatments for patients living with chronic diseases. And we are convinced that patient partnerships are the best starting point for all medical innovation. That is why we are committed to incorporating the patient voice at all stages of our product development process.
DEEP (Disease Experience Expert People) is our framework for placing patients center stage and providing an environment for their input to impact our care delivery model. The DEEP framework is guided by the European Patients’ Academy on Therapeutic Innovation (EUPATI) and is a result of mutually beneficial, long-term partnerships between members. Our DEEPs include patients, patient experts, patient organization representatives, and caregivers. For over five years, our R&D activities have been influenced by the rich, unique, and diverse array of expertise that these different people bring to the table. More than any other effort, they have enabled us to be a patient-centric provider of pharmaceutical products and tools. (See our previous article for more on the DEEP framework.)
Building On Successful Frameworks
As a result of listening to and working with patients, the DEEP network has taught us that we must continue to keep the patient experience at the front of our minds when designing our clinical trials. But we recognize we can do even more to ensure that the DEEP model remains an organic part of our processes. That is why we are taking DEEP to the next level by establishing DEEP Advisory Board meetings (DAB) in key therapeutic areas where we gather input in a more systematic way.
After hosting our very first global DAB in late 2019, we can now evaluate its impact and share learnings across and outside our organization. Like others in our industry, we know that diversity in expertise leads to more innovative solutions. The DAB provided an opportunity to bring DEEPs and Novo Nordisk colleagues with an array of expertise into the same room, working in equal partnerships. From our DEEP network, we had leaders of patient organizations, patient advocates, and patients with and without experience participating in a clinical trial. Our DEEPs were from five different countries, representing four serious and chronic medical conditions. In addition to the Global Patient Relations team at Novo Nordisk, we also invited project vice presidents, medical specialists, and trial managers to participate in the dialogue. Everyone was welcomed and valued for the expertise they brought to the table.
Across nine interactive sessions spanning two days, they swapped perspectives, shared experiences, and absorbed insights related to the overarching theme “Clinical Trials.” The agenda was structured around three key components: 1) trial design and planning, 2) trial conduct and operations, and 3) dissemination, communication, and post approval. We addressed clinical trial awareness and recruitment, the consent process, patient material and patient support technologies, and more.
It seems clear that as a concept, DAB is an opportunity to exchange new ideas and perspectives between our DEEPs and colleagues with a focus on generating concrete, actionable insights. By striking a balance between the disease-specific personal experiences of patients and industry-specific agendas such as designing clinical trials, DAB enables a dialogue built on mutual respect between all involved.
Planning Purposeful Interactions
We used our three-step DEEP activity approach for DAB 2019. We believe that each step is critical to create a successful patient engagement activity, which ultimately produces tangible and measurable outputs.
- We always have a clear objective for engaging with our DEEPs, considering our knowledge catalogue of past DEEP activities.
- In defining the DAB objective, scope, and agenda, we strive toward transparency with all stakeholders. The objective of this DAB was to identify the barriers, motivators, and patient support options related to clinical trial participation for patients.
- We set clear expectations, for both DEEPs and Novo Nordisk colleagues, as we lead and moderate the DAB activities.
- We listen and note everything down without bias, knowing that every interaction is an opportunity to learn, and relevant insights can be captured at any time — even during breaks.
- Outcome: insights, actions, and implementation
- In the post-DAB period, results are interpreted and translated into insights, recommendations, and actions and summarized in a comprehensive outcome report.
- We use an evaluation matrix, where the impact of recommended action points is estimated and mapped against the resources required for implementation.
Turning Insights Into Action
It's imperative that we are accountable for everything we do when we work with our DEEPs. That's why we need to ensure that all DEEP input is evaluated and implemented, where possible, in our work. A key component of this is to measure and report the impact of DEEP activities both internally and back to our DEEPs. We want to ensure we are transparent when we work with our DEEPs so they can see the impact of their input. Our Novo Nordisk approach is inspired by the IMI PARADIGM (Patients Active in Research and Dialogues for an Improved Generation of Medicines) project, which is developing a monitoring and evaluation framework for patient engagement.
The DAB 2019 identified and recommended a total of 62 actions clustered across 15 key themes. Actions were mostly related to either clinical trials, disease, or treatment, with 59 percent of the recommended actions being classified as high priority in our evaluation matrix. Other uncovered recommendations were, to varying degrees, found to have been already put into practice. However, these insights have allowed us to realize that we are on track in some areas but that there are always opportunities for us to improve.
To ensure implementation of recommended actions, we define for each action: Who is responsible for implementation? How is success measured? How are stakeholders incorporated into the process? Together with the action recommendations, this is summarized in a comprehensive outcome report. Half-yearly follow-ups are scheduled with the project team to report on implementation status of actions and ensure that patient insights are implemented.
Alongside this, paired pre- and post-activity surveys are conducted with the participating DEEPs and Novo Nordisk colleagues to ensure alignment of expectations (objective/roles), measure satisfaction with the DAB, and collect suggestions for improvements in future activities. On top of this, feedback interviews with some of the participants allow us to have a complete picture of the impact of the activity and report on it internally as well as externally in an outcome summary to our DEEPs. We believe these principles of accountability, transparency, and openness are crucial for the success of our long-term DEEP partnerships.
The first six-month review of the DAB actions is just around the corner and we are eager to check the status of actions and report back to our DEEPs what has happened. The information was also shared with our Novo Nordisk internal network on patient engagement, to ensure that knowledge is spread across the organization. At the same time, we are busy adapting the DAB concept into a virtual format to account for the current COVID-19 situation and be able to proceed with activities in 2020.
Measuring the impact of activities and reporting on them, both internally and externally, are necessary to truly act on patient insights and to have meaningful patient engagement. We are happy that the DEEPs we partner with continue to hold us accountable and enable us to continuously transform our patient-centricity journey.
About The Authors:
Charline Coquerel is director and head of Global Patient Relations at Novo Nordisk. She is responsible for Novo Nordisk’s corporate patient engagement and advocacy strategy, ensuring there is a systematic approach for soliciting and integrating patients´ insights across the product development value-chain. She joined Novo Nordisk four years ago. Coquerel has over 16 years of industry experience in public affairs with a strong focus on advocacy and patient engagement, both at a global and local level.
Sherina Kuruvilla is associate project director in the Global Patient Relations team at Novo Nordisk. She is currently responsible for leading the research and development (R&D) patient engagement strategy for Novo Nordisk. She joined Novo Nordisk in 2002. Kuruvilla has over 16 years of industry experience in clinical operations, while always having a strong focus on patient engagement and incorporating the patient voice in drug development.
Lukas Eichmann is associate patient relations manager in the Global Patient Relations team at Novo Nordisk. In his current role, he is managing the DEEP network and is responsible for analytics and implementation of insights, drawing on his experience with quantitative and qualitative analytics. He joined Novo Nordisk in 2018 and has previous experiences in his field of business administration and economics.