PRISMS: the global initiative empowering people with MS

Written by Trishna Bharadia, Aaron Boster

Multiple sclerosis (MS) is a progressive neurological disease that affects about 2.8 million people in the world [1]. MS has no cure and until the 1990s had few treatment options. However, the past 30 years have seen a rise in the development of disease-modifying treatments that have greatly improved both clinical outcomes and quality of life of people living with MS.

Although new treatments are continuously being developed, one largely untapped disease management area remains – patient engagement. Patient engagement is often overlooked but is gaining increased recognition in the management of various diseases, including MS. Actively engaging patients in making decisions about their treatment not only improves clinical outcomes, but perhaps just as importantly, also gives patients a sense of control over their disease. Given the positive clinical and personal outcomes, the importance of patient engagement in treating MS cannot be overlooked.

Improving access to knowledge

The first step towards meaningful engagement is equipping patients and their caregivers with up-to-date knowledge about the disease and treatment options. This can in turn inform their discussions with healthcare providers and allow them to fully participate in shared decision-making. Unfortunately, people affected by MS often struggle to access information about the cutting-edge research into MS and its treatments. This is primarily shared among scientists and healthcare professionals (HCPs), which makes it difficult for people affected by MS to keep up with the latest developments. Overcoming this accessibility issue is therefore key to empowering people affected by MS to understand the disease with its treatment and care options and to become active participants in steering the course of their MS journey.

Patient Reflections and InSights in MS (PRISMS) is a first-of-its-kind, free global initiative designed by Oxford Health Policy Forum (OHPF; UK), a not-for-profit community interest company that drives changes in health policy by working in collaboration with medical and policy experts. PRISMS is a novel multi-channel initiative that paves the way towards impactful patient engagement by making cutting-edge MS research accessible to people living with MS, their families, caregivers and HCPs. In a series of online webinars, conferences, podcasts, infographics and animations, PRISMS will provide reliable patient-focused information about MS, equipping people affected by MS with knowledge they need to confidently enter meaningful dialogues with their healthcare providers.

PRISMS’s mission is to co-create a series of programs dedicated to meet the needs of people affected by MS from around the globe by bringing together patients, families, caregivers and HCPs for mutual benefit from increased communication and learnings.

Putting people affected by MS first

PRISMS takes a revolutionary step towards bringing people affected by MS to the center of its work and creating a close collaborative opportunity with HCPs to co-develop and co-deliver PRISMS educational activities. At the first-ever PRISMS webinar, ‘Shining a light on MS learnings from the COVID-19 pandemic’, people living with MS worked with HCPs as part of the PRISMS steering committee to create the agenda for the webinar, and also chaired and presented at the webinar itself. This co-creation process ensured that the topics resonated with both people affected by MS and their HCPs, giving them the opportunity to reflect on shared experiences and learn from each other in the process.

Moreover, PRISMS is shaking the norm of how scientific knowledge about MS is shared in the MS community by choosing people living with MS and their families, caregivers and HCPs as the target audience. This is in stark contrast to other events such as traditional scientific conferences and congresses, in which the latest MS research is shared predominantly with researchers and HCPs only. Too often, people affected by MS struggle to access cutting-edge research about the condition simply because of their lack of scientific or medical background. This can not only make it difficult for them to understand the content but can sometimes even prevent them from being able to register to attend traditional congresses. We need to recognize that people affected by MS are able to and want to learn about the scientific mechanisms that cause MS as well as the latest research about how MS can be managed – after all, they need this knowledge to make informed decisions about their own treatment and care plans. Increasing access to MS research findings can be done in many ways, including by adapting scientific information into a language understandable to a non-expert audience, as done at the PRISMS webinar. In doing so, we can start to break down the communication barriers that can hinder people living with MS from learning about the very condition they live with.

Creating a global community

An accessible platform for educating and empowering people affected by MS is only as good as its reach within the MS community. PRISMS broadens the range of people who can benefit from its initiatives by addressing patient diversity on both individual and global levels. The first PRISMS webinar did so by bringing together speakers and attendees from different backgrounds across the world. This is important because experiences may vary greatly among individuals, and MS management strategies differ according to country-specific healthcare systems. PRISMS captures these diverse voices to understand the challenges faced by people with MS across the world.

The first PRISMS webinar was a truly global event. It was developed by people from four different continents, reached attendees from 54 countries and was translated into four languages. Its extended reach was facilitated by being online, which removed the potential barriers that travelling and other associated costs could have created. The PRISMS webinar was recorded and is available on-demand. This both enables people with MS to watch it at a time that is convenient for them and allows them to work through the information at their desired speed. This may involve slowing down the speed of the videos to process the information more easily or watching the webinars in smaller parts to lessen the cognitive fatigue often experienced by people living with MS. Additionally, the summary of the webinar is available as a podcast and an animation to accommodate different learning styles. Considerations such as these are important to maximize the impact and longevity of patient-focused initiatives.

Figure 1. World map showing how many people registered for the first PRISMS webinar from each country.

Finally, involving people affected by MS in the PRISMS webinar is not just about the insights they can provide; also important is the sense of community that a webinar can create for attendees, a safe space where people are understood and represented and can become inspired to take their first steps in becoming active members of the community and even advocates themselves. This echoes the additional gains from traditional scientific conferences, where researchers forge new connections and collaborations. Perhaps this highlights the real needs to think about people affected by or working with MS as people first and understand that the human connections formed may be just as important for people’s personal and MS journeys as the knowledge gained, especially if this leads to increased patient activation.

The future of patient centricity in MS

A core aim of PRISMS educational activities is to highlight the value of equitable access to scientific research and the key role of patient engagement in achieving this goal. PRISMS demonstrates that listening to people affected by MS and involving them in every step of the process is key to understanding their needs and finding ways to meaningfully address them. PRISMS hopes to be the first initiative of many that is co-created by people affected by MS, for people affected by MS, to empower them with the knowledge and confidence they require to advocate for their needs and become active decision-makers in their own MS journeys.

PRISMS’s aims

  • Highlight the value of equitable access to scientific research
  • Foster collaboration between people affected by MS and HCPs in creating and delivering educational activities to ensure their needs are met
  • Empower people affected by MS with the knowledge and confidence they need to advocate for their needs

Where can I learn more?

If you would like to learn more about PRISMS, you can watch its first webinar ‘Shining a light on MS learnings from the COVID-19 pandemic here or listen to the summary podcast hereYou can also follow PRISMS on Twitter, Facebook, LinkedIn and Instagram.


Meet the authors

Trishna Bharadia is a multi-award winning patient advocate and patient engagement advisor who received a diagnosis of MS in 2008, aged 28. Based in the UK, Trishna works nationally and internationally with multiple stakeholders to get the patient voice heard louder, stronger and more effectively throughout the healthcare journey and medicines development lifecycle. She’s particularly passionate about diversity issues in healthcare, good patient engagement practices and health literacy. She is also a patron/ambassador for several health- and disability-related organizations, including MS Society UK (London, UK), ParaDance UK (Watford, UK), ADD International (London, UK) and Lyfebulb (NY, USA).

Aaron Boster is a board-certified neurologist specializing in MS and related CNS inflammatory disorders. He has led numerous clinical trials and has founded The Boster Center for Multiple Sclerosis (OH, USA), where he is intimately involved in the care of people with MS. He presents lectures to patients and healthcare providers worldwide, with a mission to educate, energize and empower people affected by MS. The Boster Center runs an MS Educational YouTube channel that helps to keep people with MS up to date on all topics relating to the disease, including new research breakthroughs.

Trishna and Aaron both form a part of the PRISMS steering committee along with Raed Alroughani, Karina Barrera, Gavin Giovannoni, Ian Rogers, Ardra Shephard and Anjali Vyas.

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Disclaimer
The opinions expressed in this interview are those of the author and do not necessarily reflect the views of Neuro Central or Future Science Group.