• 22 Mar

    Building consensus to support patient empowerment

    TrishnaBharadia Posted by
    Trishna Bharadia

    Brain Health: Time Matters:  a model for others?

    I attended a PIF event recently about how to improve access to information for people with long term health conditions. An issue that arose repeatedly was a lack of consensus among healthcare professionals (HCPs) about the best ways to manage a condition in the long term.

    As patients, how are we meant to know what information and services we should be asking for when someone tells you A, B & C and another says A, D & E?

    Towards a consensus

    A first step towards patient empowerment is to ensure that HCPs are broadly on the same page when it comes to what patients should expect from services and information.This may be to do with timely intervention, what the ultimate goal is (depending on the condition, these goals will differ), what non-medical services should be made available etc.

    I understand that in medicine not everything is clear-cut. However, HCPs need to be more willing to change with the times, take on board new ideas and provide their patients with less conflicting information, if we as patients are to trust the information we’re being given.

    Who are we meant to believe when one consultant tells us we don’t need medication because we need to “wait and see” and another says we should start on medication straight away because “the earlier the better?”

    The MS model

    This is exactly what’s been happening in the world of multiple sclerosis (MS).

    I was diagnosed with MS in 2008 and since then have become an “expert patient.” After my diagnosis, however, I became increasingly frustrated by the seeming lack of consensus among neurologists about what I should expect from services and information, to keep me as healthy as possible in the long run.

    Some advocate a softly, softly approach (or “let’s not do anything at all for now”), whilst others advocate a more pro-active and aggressive approach. Some are only concerned about what’s visibly wrong i.e. clinical symptoms, others give weight to what we can’t see i.e. what’s happening inside the brain. Some will provide a comprehensive set of patient resources, others just don’t.

    Moving forward and challenging the status quo

    This is where the MS Brain Health initiative has been a huge step forward. It could potentially be used as a model for other health conditions. A lack of consensus can ultimately result in confused and frustrated patients. Surely, that’s not good for anyone, regardless of what condition they have?

    Professor Gavin Giovannoni, consultant neurologist and Chair of the MS Brain Health Steering Committee, says, “With time, people with MS will be exposed to the trials and tribulations of ageing. What protects you from age-related cognitive impairment is brain reserve, the size of your brain, and cognitive reserve. Your cognitive reserve is built up over decades and is related to education and brain training. If untreated, MS will reduce both the size of your brain and your cognitive reserve.”

    Brain Health Graphic

    MS Brain Health urges a radical change in the management of MS, based around the concept that time matters at every stage of the disease – referral/diagnosis, treatment decisions, and long-term management. It’s a huge step away from the “traditional” wait and see approach that was advocated for many years.

    The initiative emerges from an evidence-based international consensus report, Brain health: time matters in multiple sclerosis, which recommends a strategy to maximize lifelong ‘brain health’.

    gg-on-brain-healthProfessor Giovannoni adds, “The policy document stresses the importance of ‘patient activation’ and ‘shared decision making’. The document is not only about disease-modifying therapies, but stresses the importance of the holistic management of MS and covers lifestyle factors and co-morbidities, such as hypertension, diabetes, obesity and smoking. The document is a call to arms for the MS community to start treating MS actively and effectively.

    Health economists, specialist nurses, researchers, patient organisation representatives and clinicians came together to produce the report. The initiative aims to connect with various audiences, directly and indirectly involved in MS care, to aid the implementation of the “time matters” strategy.

    Various resources are available on the project’s website (www.msbrainhealth.org) including videos, reports, blogs and infographics.

    ms-brain-healthy-lifestyle-v2-1-w640

    The Benefits

    The actual details of the recommendations and strategy are irrelevant to this blog post.

    Why? Because I want to demonstrate why this type of initiative is so crucial to patients with all long-term health conditions, not just MS. It means taking an overarching look at its benefits, so they could be applied to any condition, disease or illness.

    1. EVIDENCE: The initial report is evidence-based. The recommendations are backed up. As patients, we should be able to ask why doctors recommend a certain approach and expect to be given the evidence. This does that.
    2. TRUST: Having consensus gives a patient confidence. There will always be differences in opinion. I’m not disputing that. However, HCPs need to come together and provide some sort of consensus for their patients if we are to be provided with information and advice that we trust. I’ve lost count of the number of MS patients I know who don’t trust what their neurologist tells them – because they speak to other patients who were told something different. Who are we meant to believe? How are we meant to make informed decisions if HCPs can’t broadly agree on what’s best?
    3. EMPOWERMENT: Having some sort of consensus and, therefore, being able to produce resources such as those on the MS Brain Health website, empowers a patient to question decisions being made about their health. It opens up dialogue between patients and HCPs.
    4. CO-DECISION MAKING: Empowered and informed patients are better co-decision makers. There’s a real move towards co-decision making and patients taking more responsibility for their own healthcare decisions. This can be facilitated by consensus models like the MS Brain Health initiative.
    5. SELF-MANAGEMENT: If a patient is equipped with the right information and resources, self-management becomes easier. This helps patients to take more control. It also alleviates the stress put on already hard-to-access services and resources from an NHS that is under continued pressure.
    6. RESOURCE AVAILABILITY: The initiative doesn’t stop at just the report. On the website there is a wide range of information resources available to patients, carers and HCPs, including videos and downloadable written material. It puts information at the fingertips of those who need it, enabling those involved in MS care to become fully informed.

    george-pepper-low-resGeorge Pepper, founder of Shift.ms, a social network for people with MS, and an MS patient himself, was part of the author group for the Brain Health: Time Matters paper. He emphasises how the report supports people making changes that can impact the long term health of their brains, including the importance of living a healthy lifestyle

    “I urge anyone affected by MS to read the report’s recommendations so that they can make proactive choices about managing their MS.” The whole initiative is a “patient enabler.”

    The MS Brain Health model is a brilliant example of stakeholders coming together with a view to the long-term benefit of patients. It’s a model that could be easily replicated across conditions, providing patients with up-to-date and evidence-based strategies via various resources.

    From a patient’s point of view, I definitely think it’s a step in the right direction.


    You can find out more about MS Brain Health on their website: www.msbrainhealth.org

    The images in this Blog have been reproduced from:

    • www.msbrainhealth.org with permission from Oxford PharmaGenesis Ltd.
    • Brain health: time matters in multiple sclerosis, Giovannoni G et al. Mult Scler Relat Disord 2016;9 Suppl 1:S5–S48, with permission from Oxford PharmaGenesis Ltd.


    Posted on Wednesday, 22nd March 2017