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The future of clinical research in neurology must be driven by community voices

Strong patient partnerships are more important than ever. In the pursuit of a personalised future for neurological care, collaboration and co-creation should be at the forefront of all research and development. That way, everything we do for patients, we do with patients.

By working directly with each distinct community, made up of people with a certain neurological variance, their families, supporters, and advocates, it is easier to gather different perspectives and address unmet needs. The community should be included in important decisions about their health, particularly in the early stages of clinical trial design to ensure research is designed to address unmet needs and in a way that encourages participation.

“The first step is recognising that within many neurological conditions, the community is diverse. Continuing to work with these communities is therefore crucial to ensure that we understand their needs and work alongside them to create meaningful tools and resources.”

Caroline Averius, senior global patient partnership director, Roche

At Roche, this extends across Multiple Sclerosis (MS), Spinal Muscular Atrophy, Neuromyelitis Optica Spectrum Disorders, Alzheimer’s disease, and autism, among others. Research is based on first-hand insights gathered from within these communities, which helps inform the initial stages of clinical trial design and drug development. Their voices need to be heard to understand the evolving needs of each therapeutic area, emerging expectations, and gaps they experience within their care.

The first step is recognising that, within many neurological conditions, the community is diverse. For clinical trials, this means that participants may have a range of needs that should be considered to develop truly inclusive research. Exploring these differences and celebrating nuances within the community requires a cultural shift – the pharmaceutical industry needs to embed inclusivity in all areas of the clinical trial process, from trial design and site selection to post-study communications.

“We cannot truly make clinical trials participant-focused until we begin to understand and take into consideration the needs of the community. Small changes can make a big difference to making participants feel seen, heard, understood, and supported, which in turn can increase clinical trial retention. That is why it is important that the industry continues to make strides in including participants in every part of the conversation.”

Christine Eighteen, global patient partnership director, Roche

Making clinical trials participant-friendly isn’t always complicated and can often include small details that make the study participant feel valued and comfortable. For example, ensuring there is on-site parking, that the site selection is not intimidating, or that staff can answer difficult questions can help ease negative feelings towards clinical trials.

Being considerate of the correct language to use when communicating with different neurological communities is vital. Many communities do not consider themselves as patients. People at different stages of a condition may also have different outlooks and attitudes.

For example, within the Alzheimer’s community, people may have periods of wandering or forgetfulness, and may act differently depending on their mood and cognitive ability that day. This can make it harder to gain clear consent for somebody to take part in a trial. It is through close collaboration and in-depth discussion with the community that these potential issues can be addressed.

“I think it’s very important to have a human approach. In this aspect, opening the [clinical trial] process with the family and the participant in a human way is of the utmost importance because you need to gain their trust and maintain it along the whole way.”

Alzheimer’s community representative

Co-creation of materials can help address the unique barriers these communities face

In neurology, every person requires a different approach to their management and care in a clinical trial. Neuroscience is an area that needs to see more of a participant-first approach emerging from the pharmaceutical industry. It is a must to make sure that the participant’s and study partner’s needs are put first, and to ensure that this is done correctly, by learning from the very same community the trial is serving.

Whilst some considerations that need to be made are general and apply to all research design, there are specific considerations depending on the therapeutic area being studied and neuroscience is a highly complex field where the individual needs of each and every member of the community vary. Given this, Roche has been working with representatives across autism, Alzheimer’s, MS, and beyond to collaborate on a series of guidebooks for those designing clinical research, focused on improving the clinical trial experience.

“Alzheimer’s disease is one of the biggest public health challenges of our time, impacting millions of people around the world. The care and support for people living with Alzheimer’s disease and their care partners is extremely complex and its provision is challenging. In this context, clinical research in Alzheimer’s disease is more important than ever. We need to ensure that we are approaching clinical trials with open minds, and to not be scared to take risks or challenges to encompass the needs of participants.”

Jannice Roeser, global patient partnership director, Roche

Co-created with the autism community, the Guidebook for Participant-Friendly Clinical Trials in autism highlights the diverse needs within the autism community, and how we can overcome or reduce the barriers participants face when taking part in a clinical trial. It provides both general and specific considerations for designing, conducting, and supporting participants in autism clinical trials.

“People with autism are not always included in the clinical trial development process, and large parts of the community with profound autism can often be excluded in conversations around their health. It is therefore very important that people with autism at all levels are informed about clinical trials and what it means for them.”

Autism community representative

Paving the way for more successful research in clinical trials

A new guidebook for the Alzheimer’s community, Integrating the perspectives of people living with Alzheimer’s disease and their study partners into clinical trial development, provides a series of recommendations and key information focused on the complexity of the community.

Built with the Finding Alzheimer’s Solutions Together (F.A.S.T) Council, it focuses on a range of considerations for the community and researchers. For example, it notes that people living with Alzheimer’s are heterogenous in terms of symptoms and cognitive ability. They are sometimes psychologically vulnerable and may act differently day-to-day depending on their mood or willingness to participate in everyday life.

It is therefore important to provide information about a clinical trial upfront and be transparent throughout the process, sharing information about the trial design and study drug’s mode of action in a way that is easy to understand. Study partners, who often do not know which challenge they will face from one day to the next, should be given clear expectations regarding their attendance during a trial and receive detailed information.

“It is driving personalised care in neuroscience, and ensuring all of our activities have a tangible, real-world impact.”

Stephanie Ludwig, global patient partnership chapter lead, neuroscience, Roche

Co-created tools like these can pave the way for more successful research in clinical trials. It’s up to pharmaceutical companies to embed community perspectives and insights into their core decision making. It is through these community insights that they will be able to deliver a truly personalised approach to neurological care.

About the authors

Caroline Averius

Caroline Averius

Caroline Averius, senior global patient partnership director at Roche, focuses on neurological communities such as the Autism community, and has worked in clinical development at several pharmaceutical companies (MSD, Actelion, & Roche) for 15 years. Over the last four years, she has been following her passion for inclusivity and equality, focusing on working with the communities in psychiatry to integrate their voices into the development of Roche solutions. She is also one of the organisers for the Roche-sponsored global platform, International Experience Exchange with Patient Organisations, that aims to inspire and equip patient communities to be strong and impactful partners with an equal voice in the healthcare ecosystem.

Christine Eighteen

Christine Eighteen

Christine Eighteen, global patient partnership director focused on Multiple Sclerosis (MS), has over 20 year’s experience working in the pharmaceutical and healthcare industry.

As a Canadian, she started her journey in medical communications before moving to Switzerland in 2008 to continue her journey at Roche. Here she has worked in various roles and it was when she was conducting market research with patients where she really learned about the impact of unmet needs that patients are facing today in healthcare. This ignited her passion to join the Global Patient Partnership team in 2019 where she is dedicated to raising the voice of the MS patient community and co-creating with them meaningful solutions in order to improve their lives and the lives of their supporters across the entire journey.

Stephanie Ludwig

Stephanie Ludwig

Stephanie Ludwig has been with Roche since 2020 as principal global patient partnership director. In this function, she engages with multiple patient organisations, individual patients, caregivers, and other stakeholders to help generate the greatest value to people impacted directly or indirectly by neurological disorders. She has over 20 years of leadership experience in the research and consultancy industry for health-related projects and has trained global facilitators and moderators to interact with patient communities and patients. She holds an MA in educational science, psychology, and sociology and has worked as part-time lecturer at the Rheinische Friedrich-Wilhelms-Universität Bonn for psychoanalytical approaches in communication.

Jannice Roeser

Jannice Roeser

Jannice Roeser has been a global patient partnership director at Roche since 2020, focusing on Alzheimer’s disease. She has eight years combined experience in both healthcare communication and patient partnership. In her current role, she is facilitating the understanding and integration of the patient community perspective into the Roche activities in early development and beyond to improve the life of people living with Alzheimer’s and their caregivers. Before joining Roche, Jannice was patient advocacy manager at Takeda France, covering disease areas such as multiple myeloma, lymphoma, and lung cancer. Jannice is native French and is passionate about her hometown Strasbourg. She has lived in Basel since 2020 and is now discovering the Swiss way of life.

About Roche

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Founded in 1896 in Basel, Switzerland, as one of the first industrial manufacturers of branded medicines, Roche has grown into the world’s largest biotechnology company and the global leader in in-vitro diagnostics. The company pursues scientific excellence to discover and develop medicines and diagnostics for improving and saving the lives of people around the world. We are a pioneer in personalised healthcare and want to further transform how healthcare is delivered to have an even greater impact. To provide the best care for each person we partner with many stakeholders and combine our strengths in diagnostics and pharma with data insights from the clinical practice.

The Roche Global Patient Partnership (GPP) team works across the company to embed patient perspectives and insights into core decision-making. By working with the very same communities the research serves, Roche aims to embed these perspectives in the early stages, such as through the development of the autism and Alzheimer’s guidebooks. Both the autism and Alzheimer’s guidebooks were produced and fully funded by Roche in collaboration with community representatives.

This article has been produced and funded by Roche.

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