Politics: patient engagement in the 21st Century

What does the term patient-engagement mean for you? #MSBlog #MSResearch

"Patient engagement; what does it mean? About 18 months ago I was asked to join a mainly European lobby group called MS in the 21st Century. Its aims were to define and promote how MS treatment and standards of care should look in the 21st century; to develop a minimum standard of care across the world; and to motivate the broader MS community to align standards of care and challenge the current treatment paradigm. I was invited to the join the group after they produced their first document (below). I think I was invited because of  Barts-MS's activities in relation to MSer engagement. Please note I am using the term MSer and not patient as this is one thing we have learnt from engagement is that MSers don't want to be called patients and prefer the term MSer or person with MS."


"To me MSer-engagement is a philosophy that needs permeate everything you do, which is something we aspire to at Barts. For example, we have a Barts-MS MSer focus group to test, and pilot, every service development we want to implement, be it an information sheet or a complex specialist service."

"Our group spends a lot of time thinking about what we can do to engage with MSers in a meaningful way; i.e. to add value and not waste their time. A lot of patient and public-engagement initiatives are PR exercises; they are easy to spot they are  typically one-way streets with communication flowing in one direction from the professionals to the patients."

"How can we promote MS self-management without making them feel isolated and alone and not abandoned? How do we make MSers experts in the field of MS so that they can make informed decisions about their treatment? How do we get MSers involved as volunteers in running our MS services? How do empower MSers to monitor their own disease and to understand the need to monitor their own disease? How do we teach MSers about possible MS prevention strategies? What can we do to encourage MSers to participate in clinical trials? How can we engage with MSers to help us teach other healthcare professionals about MS?  How can we interact with the MSers and MS charities in a meaningful way? How can we be more responsive to MSers under our care with shrinking resources? How do we engage with MSers to help lobby politicians to allocate appropriate resources for the management and treatment of MS?"

"The MS in the 21st Century initiative will be submitting a second manuscript based on the poster below that was recently presented at the ‘Pan European multi-stakeholder colloquium exploring opportunities and challenges for improving Multiple Sclerosis management’ in Brussels on 23rd of May. The MS in the 21st Century Committee believe that the following requires action:" 
  1. Setting and facilitating engagement by education and confidence-building.
  2. Establishing patient profiles and individualization to promote shared decision-making.
  3. Increasing the importance placed on QoL and patient concerns through patient-reported outcomes (PROs).
  4. Providing credible sources of accurate information. 
  5. Encouraging treatment adherence through engagement.
  6. Empowering through a sense of responsibility. 
"I would be very interested in your thoughts and feedback about initiatives of this sort and the proposed aims. I am also interested in what patient or MSer engagement means to you and do you think the list above needs expanding or shortening?"




Rieckmann et al. Future MS care: a consensus statement of the MS in the 21st Century Steering Group. J Neurol. 2013 Feb;260(2):462-9.

The "MS in the 21st Century" initiative was established with the purpose of (1) defining how multiple sclerosis (MS) treatment and standards of care should look in the 21st century; (2) developing a minimum standard of care across the world; and (3) motivating the broad MS community to align standards of care and challenge the current treatment paradigm. The aim was to develop a consensus statement to reach and influence the broader MS community. An expert steering group from Europe and Canada-consisting of neurologists, patient advocates, a pharmacoepidemiologist/pharmacoeconomist, and representatives from national MS centers-participated in a series of workshop-driven meetings between February 2011 and 2012. After three phases of discussions, the steering group identified that the overall vision for future care of MS should be full access to personalized treatment, with reimbursement, to achieve freedom from disease. They constructed seven overall principles that support this vision: personalized care, patient engagement, commitment to research, regulatory body education and reimbursement issues, new endpoints in clinical trials, more therapy options, and MS centers of excellence. This consensus statement outlines the key aspects of the seven principles that need to be addressed. The "MS in the 21st Century Steering Group" hopes that this consensus statement acts as a call to action for healthcare providers and decision-makers to address simultaneously the overarching principles that will guide patient management in order to improve outcomes for people with MS.


CoI: MS in the 21st Century is funded by a generous educational grant from Merck-Serono

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