The many faces of patient-pharma co-creation

Ahead of her appearance at eyeforpharma Barcelona, Merck’s director of patient advocacy and strategic partnerships, Vanessa Pott, tells us how the company is approaching patient centricity and how she hopes patient-pharma collaboration will evolve.

What does your role involve?

I am a member of Merck’s global Patient Advocacy and Strategic Partnerships team which reports into Corporate Affairs. The team was created about four years ago with a two-fold mission.

Internally, we act as a centre of excellence to support our local, regional and global colleagues with a fully-integrated and consistent approach to patient and carer engagement.

Externally, we are ambassadors of our company and build strong and meaningful relationships with the patient and carer community, which in turn enables us to embed their voice into research, development, and commercialisation of our healthcare solutions.

Merck’s primary mission is to bring pharmaceutical products to the market which improve human health. We recognise the important role that patient organizations play in providing support and disseminating information to both patients and their caregivers.

“A council of individuals living with MS provided feedback and insights on the choice of patient-reported outcomes endpoints in our trials, specifically in relation to relevance of PRO measures to the real-world patient experience”

My role is focused on our relationships with fertility, neurology and auto-immune groups as well as women’s health and caregiver networks, primarily in Europe.

What kind of partnerships do you seek out to help Merck’s patient engagement?

“Patient-centricity” is often defined as the process of designing a service or solution around the patient or with the patient in mind, but we prefer to take a more impact-oriented approach at Merck which is underpinned by our ambition to become a truly “patient-directed” healthcare company.

Inspired by the “Nothing about us, without us” mantra, this means that we see it as our responsibility to ensure that the insights we get from patients and carers actually shape our decision-making and have a meaningful impact on our behaviours.

This of course means that the kind of collaborations we are seeking to build are long-term strategic partnerships with patients and carers and not just transactional.

What would you say are the biggest unmet needs facing patients in general that pharma can address?

There are many, but the first area that comes to mind is the need for innovative, streamlined and accessible clinical trials with an emphasis on increased ethnic diversity, women and rural area participation.

I’m currently involved in a project, for example, where we will be measuring the impact of home health services in a clinical trial setting on both the patient and the carer. We believe that relieving the patient from having to do an eight-hour round-trip to the clinic will automatically have beneficial effects on the carer’s wellbeing as well, ensuring that they can better support the patient.

It’s important to measure these effects so we can ensure the burden of participating in research is even lower in the future.

How is patient engagement changing R&D? 

Before and during the clinical trial design process, our researchers strive to hear what patients are interested in, what they want the drug to do, and what they are willing (or not) to do as part of a clinical trial.

Whilst there are many means to obtain these insights (e.g. social media or aggregate data), we believe that engaging directly with the patient community adds a unique value to our research.

We regularly organise advisory boards and insights exchanges to learn first-hand how the disease impacts patients’ lives so we could address their needs as part of the clinical research.

Besides ensuring that the endpoints and objectives of our trials are in the interest of the patient community, it’s also key to execute them in a manner that is conducive to the patients’ participation.

To support our teams in this endeavour, we have developed a series of tools and resources to help simplify the protocol design or eliminate barriers to participation – which will help us deliver a final product that is more meaningful to the entire patient community.

An example is the design of our two phase III trials in multiple sclerosis, which were launched at the end of last year: We collaborated with the Accelerated Cure Project (ACP) for Multiple Sclerosis and its iConquerMS people-powered research network to capture and integrate the perspectives of people affected by MS into the design and implementation of the studies.

Through this collaboration, a council of individuals living with MS provided feedback and insights on the choice of patient-reported outcomes (PROs) endpoints in the trials, specifically in relation to relevance of PRO measures to the real-world patient experience and insights on patient-facing materials.

What are your priorities for patient engagement initiatives in the near future?

We see great opportunities for further deepening our patient engagement efforts and better understanding unmet patient needs in the next three to five years. We’re particularly encouraged by recent trends in the regulatory and external environment to embed the patient voice more holistically in the decision-making process (e.g. the FDA initiative around Patient Focused Drug Development).

At this stage, to ensure meaningful impact of patient collaborations, I think it’s key to shape industry best-practice and share learnings from both the patient organisations’ and the company’s perspective so that we can jointly move towards a common standard across companies and geographies.

With patient lay summaries for example, there is actually very little guidance and no common definition as to which endpoints to include beyond the primary endpoints. How do we define patient-relevant secondary endpoints and avoid cherry-picking? And how do we write the summaries in a way that is meaningful for patients?

What would you like people to take away from this year’s eyeforpharma?

We know patient organisations play an important role in providing support and disseminating information to patients and their caregivers.

My hope is that we move beyond discussions about why patient engagement matters and that we can instead have a great exchange about how we are operationalising patient engagement across our organisations. What works? What doesn’t? And what can we all do together to ensure more harmonisation in this space?

Our main goal must be to engage with patients and make sure that the insights we obtain contribute to shape our decision-making.

Vanessa Pott will be speaking at eyeforpharma Barcelona 2020. Due to the ongoing nature of Covid-19, eyeforpharma Barcelona will operate as an entirely virtual conference.  They are busy putting together the biggest and best virtual conference that only eyeforpharma by Reuters Events can deliver.  Please check the website for more details.