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Fighting mito,
finding hope.

A patient-centric partnership


27 September 2022

The Lily Foundation works with various global pharmaceutical companies, including Astellas, to help raise awareness of mitochondrial disease among the company's employees and ensure a patient-focused approach to research. We asked Chelsea Moran, Associate Director of Patient Partnerships at Astellas, to tell us why pharma is turning its ear to patients.

A group of adults sat all looking at one adult who is expressively holding their arms out

Hi Chelsea, thanks for talking to us! Associate Director of Patient Partnerships is an interesting job title, can you tell us about your role at Astellas?

Our aim as a company at Astellas is to provide innovative medicines in areas of health where there's a need for treatments. We know that to achieve that effectively we need to involve patients in our research and development, so the Patient Centricity division was set up with that goal in mind. When you're researching treatments for complex diseases, it's no longer enough to just look at what's scientifically possible; you also have to look at specific patient needs, and how you can bring that together with the science in a way that benefits them. The role of the Patient Partnerships team is to talk to patients and patient organisations, to find out what their needs, experiences and priorities are and share those with our internal teams. Patient perspectives are especially important with a complex condition like mitochondrial disease, so working with organisations like The Lily Foundation is vital.

How did your partnership with The Lily Foundation come about?

Mitochondrial disease is one of the areas of medicine we focus on, so when we researched organisations working in this area, The Lily Foundation naturally came up. We first reached out to the charity in November 2021, and we've had regular catch-ups since then. We know from our meetings with the Lily team, and from talking to other mito organisations like My Mito Mission, Mito Action and International Mito Patients, that there's an urgent need for treatments and therapies in this area. And we also recognise that there can be a real lack of understanding, even within the medical community, about the impact mitochondrial disease has on people's lives.

Astellas has an initiative called Patient Centricity Month. Can you tell us more about that?

Part of our activity as a patient-centric company is to raise awareness of patient experiences internally in the company, because not all of our employees have the opportunity to have direct contact with patient groups and charities like The Lily Foundation. If you're in finance, procurement or IT, for example, you might not understand how your work impacts patients. So we organised something internally called Patient Centricity Month, and this year was the second year we've run it. Essentially, it's a month-long program of activities where we look to bring the patient voice to our colleagues internally, and share examples of patient-centric work happening across Astellas, to remind everyone that 'patients are why.' They are the reason Astellas exists, why we do our work, the reason we get out of bed every day.

How was The Lily Foundation involved in that initiative?

As a part of Patient Centricity Month 2022, we interviewed patient organisations in a live setting, with the opportunity for people to ask questions. Liz (Curtis, CEO of The Lily Foundation) joined us for a live online talk about mitochondrial disease, and shared her story of the journey that she went through with her family and setting up the charity. Every employee at Astellas was invited to attend, across all departments, and we had over 200 people on the call. We had strong interest from our research and development teams, who  were keen to hear the patient perspectives that were shared. Our colleagues in the US also did an interview with United Mitochondrial Disease Foundation, and there were around 300 colleagues on that call. So between those two groups you're looking at a good number of employees that joined the mito calls. Afterwards we put the videos on an internal online site for people to watch if they weren’t able to join the live talk.

That sounds like really strong engagement. What was the feedback like?

It has been really positive! We found that the live talks have been the number one engagement tactic, as they really help people feel connected to the patient experience, and raise awareness about the impact of the disease areas we work in. The video Liz made had a particularly strong impact. I played a clip in a Patient Centricity Month workshop, and the feedback from an attendee was that it was the most impactful presentation that they'd seen in the last five years. People appreciated that Liz shared her personal story, and were really moved by it. After Liz's talk, colleagues proactively reached out to say how much it had touched them. So it was great to hear that. We sent out a feedback survey at the end of Patient Centricity Month, and the vast majority of respondents, over 80%, said it had helped them better understand patient needs and how to be more patient centric in their own work.

What do you think people were most surprised to learn about mitochondrial disease?

I think what really struck people, including myself, was the complexity of mitochondrial disease and all the different ways it can affect patients. Even people who had some prior awareness about the condition were impacted by that. It's important that people have that opportunity to hear the personal stories of those who are affected, and to see how they experience the disease in their lives. After Liz's talk, we had people reaching out and saying they didn't have dry eyes. People were talking about it in the office the next day, which I think shows how much impact it had. Liz's message is that if you can tell at least one new person a day about mitochondrial disease then you're helping to raise awareness, so being able to tell hundreds of people at the same time, and have them talking about it beyond that, really helps to get the message out.

Do you think the pharma industry is moving in a positive direction when it comes to mitochondrial disease research?

Absolutely, and particularly where patient perspectives are concerned. There's a growing consensus across the industry that it's no longer good enough to just go where the science leads you. We have to understand what patients need, what the relevant outcomes are for them, and what's really going to make a difference to their quality of life. And what we're also seeing is an increased expectation on pharma to show they're putting patients first. External regulatory bodies are requiring companies to demonstrate real value in products from a patient perspective, and to show they are working with patient groups to bring those perspectives into their research and development approach.

So as an industry we're moving more towards forming long-term, ongoing partnerships with patient groups. Instead of just taking part at the clinical trial stage, patients are informing how trials are designed, and helping to set protocols and research priorities. Those authentic patient-first behaviours need to be embedded, so you end up with a more meaningful solution that really helps make a difference to people's lives. It's great to see the industry is moving in that direction.

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