Thursday, 13 November 2014

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

12 comments:

  1. Why do so many initiatives such as this have to be funded by Pharma? What is their motive? I suspect to drive prescribing and adherence. It is all about shekels and lots of shekels.

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    1. Well you have to find the money from somewhere to set these things up. Sure, Merck-Serono think it'll be of reputational benefit to them otherwise they wouldn't bother but I think in this case that's as far as it goes.

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    2. I agree. I think in the case of Merck-Serono it is mainly a social responsibility initiative.

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  2. For starters how many MSers are on your committee? From the author lists of the publication and the poster it does not appear to me that many patients are sitting on this committee. Is this an own goal Prof G? Is this an example of what you are referring to when you say a one-way street?

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    1. Re: "For starters how many MSers are on your committee?"

      Well spotted. There is 'patient-representative' on the committee, but no patients. At the last meeting I asked for this to be rectified. I think all of us on the committee would welcome MSers. A few recommendations have already been made.

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  3. Can you give any concrete examples of how this initiative has changed policy or access to services for people with MS? I always find it hard to judge the success of these sorts of committees. I suspect the money would be better spent bribing EU officials in Brussels and the EU member states.

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    1. Re: "Can you give any concrete examples of how this initiative has changed policy or access to services for people with MS?"

      I am new to the committee and will ask the Peter Rieckmann the chairman to answer this question.

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  4. Very interesting, I'd like to contribute/feedback, can we use an email address to do this? Unfortunately this blog doesn't accept posts from my Mac, so I have to use my tablet, which is too annoying for more than writing a few lines!

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    1. Yes; please send to g.giovannoni@qmul.ac.uk

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    2. Great! I'm tied up with work deadlines but hopefully at the weekend. Thanks

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  5. My idea of patient engagement is transparency and information. Involving patients in decisions about their lives / care, and importantly listening to and respecting patients views. Copying in letters / correspondence about patients to patients and sharing any results in a timely manner and in a way one can understand. Being open to and encourage patients to ask questions so consultations are a two way discussion.

    I'm also in favour of patients being on committee boards. I've actually enquired about this as I would like to get involved in some way but sadly my local trust don't have this type of forum.

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  6. I will add being treated as an equal is very important to me. I may not be a neurologist but I live with MS every day. I know my own body, priorities and value base. I am an informed patient. I can only speak for myself but I value personal autonomy highly. MS can take so much away from you and leave you feeling out of control anyway. Not feeling listened to in respect of your care and/or needs, can in my view significantly impact on one's overall wellbeing.

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