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We attended NICE 2018 Conference and here is the report

Sarah Hamburg, a trustee of FMA UK recently attended the Nice 2018 conference in Manchester. The theme of this conference was improving healthcare, with a particular focus on technology and how it can help health outcomes.

Patient involvement in activities such as this can help shape discussion as well as keep fibromyalgia part of the health conversation. Anyone can be a fibromyalgia patient advocate with participation on your local GP or NHS trust patient liaison committee being a great place to start.

Below are some informational points from the NICE conference.


Uniting the science and practice of clinical improvements

·        To increase the use of NICE recommendations, need to increase opportunity (raise awareness of NICE guidance), increase capability (provide practical support and training), and increase motivation (use effective leaders)

·        NICE impact reports can be used to measure success of recommendations

·        Having an academic researcher in a clinical residence position can help mobilise established evidence and help create new evidence

·        PINCER is a new computer search performed by pharmacists that can identify people at risk of harm from their prescriptions


What’s changed at NICE

·        NICE have implemented a “technical engagement” step in their technology appraisals process

·        This aims to give companies an opportunity to react to comments by NICE and make changes, therefore achieving faster access to drugs for patients


Talk by CEO of charity Duchenne UK (Emily Crossley)

·        Set up a charity in 2012 when her son became unwell with Duchenne muscular dystrophy

·        The charity now funds over 50 research projects into the disease

·        The charity works with other agencies to build evidence for drugs for NICE appraisals – collaboration between clinicians, academics, industry, charities, and patients

·        Created a “burden of illness” model for the disease – instrument to adequately capture patient experience. “Having a good disease model speeds up the process of drug discovery and development because everyone is on the same page”


Managing care for patients with multi-morbidities

·        Wider factors, beyond disease, are also important

·        Findings of a trial of a “community based social intervention course” with “difficult to engage” patients suggested it’s actually the services that are difficult for people to engage with, and found such courses can empower people to take a lead on their own care

·        These courses can address the idea of “what is a medicine” (e.g. exercise, talking therapies, drugs, posture), sources of trusted information and why it’s trusted, NICE guidance, etc. Can also help people to structure what to say to their GPs and clinicians (e.g. their own goals) to empower people

·        Care for older people with multi-morbidities usually has a reactive approach to care. A person-centred frailty unit was set up in a hospital, to improve care and reduce readmission, and the trial was discussed


Apps and wearables

·        Over the past 12 years NICE has evaluated many new digital healthcare products (e.g. CBT)

·        Digital healthcare products can empower people to manage their own health

·        NICE assess many aspects of digital products (e.g. usability, content, data protection)

·        The Digital department at Public Health England has been using social media to target online mental health treatment at people with specific mental health problems (diagnosed by their social media posts)


Big data for healthcare

·        Insights from health records (bioinformatics) is changing things as it allows us to make new links

·        There is a need to embrace data from phones as it can provide information about environmental factors

·        There are many barriers to using big data in healthcare (e.g. legal issues)

·        New technologies are driving research but clinically we haven’t kept up

·        NICE’s role is to put existing technologies together in a way that has a clinical effect – the challenge is to make technologies clinically relevant


Patient-centred systems leadership

·        Services are changing (e.g. becoming more complex, more collaborative, blurring of primary and secondary care)

·        Because of this there is a need for “systems leadership”: people who can visualise and understand the big picture/larger system, encourage others to see the wider picture, understand shared goals, shift focus from reactive problem solving to imagining the future, understand the context/political climate in which you are working

·        Leadership can be found at all levels (hierarchical structures are the old way of leading)

·        Systems must be transparent in order for them to be able to learn from their mistakes


Digital health revolution

·        Need to train around 350k more data scientists to enable them to work in health

·        The key to future technologies in healthcare is the convergence of technologies

·        It is necessary to engage with industry, but there must be trust and transparency

·        There is a need to use our health data for the common good


Future of healthcare

·        Moving towards integrated care, away from competition and towards innovation

·        This shift will mean more joined-up care for patients, and more predictive care

·        New technology is going to be brought into clinical practice as quickly as possible

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