• 31Mar

    5.5 million patients are estimated to have missed out on vital information at diagnosis

    More than a third of people living with a long-term condition disagreed that they were given helpful information about their condition when first diagnosed, according to new research by the Patient Information Forum and health policy consultancy, MHP Health. The research, published in a new report, ‘Is knowledge power? Using information and support to empower patients’, reveals that a fifth of patients disagree that they have enough information to feel confident in discussing decisions about their own treatment with their doctor.

    Research was conducted to determine the progress and prospects for empowering patients through information, central to current NHS policy.  This is particularly relevant when improved self-management by people with long-term conditions is seen as a key driver of sustainability for the NHS.

    A nationally-representative sample of 6,000 people, including 1,567 people with long-term conditions were surveyed as part of the research. Based on the poll findings, the report estimates that in England:

    • 36% of patients with a long-term condition, over 5.5 million people, disagree that they were given helpful information about their condition when they were first diagnosed
    • 21% of patients, representing over 3.2 million people, disagree that they have enough information to feel confident in discussing decisions about their care with their doctor
    • 29% of patients, over 4.4 million people, feel that their views are not taken seriously by their doctor

    In response to this data, the Patient Information Forum is recommending four actions for to the Government, NHS England and the Royal Colleges in order that they may deliver on the promise of a sustainable NHS:


    1. Ensure provision: Integrating information within the care pathway
    Information needs to be recognised as a key intervention for improving outcomes. This should be seen as a core part of a patient’s care, should be personalised and delivered as a standard part of engagement. Information should be accompanied by appropriate support structures to ensure it can be used effectively. ‘Information prescriptions’ should be trialled and evaluated as a key lever to empower people through information.


    2. Ensure local leadership: Driving the provision of information locally
    With information recognised as a key intervention, there should be a dedicated lead for patient information within all clinical commissioning groups and trusts. Such leads should have an appropriate mandate to ensure consistent and effective delivery and pursuit of commitments and aspirations for empowerment through information.


    3. Ensure quality: Creating a national plan for information
    NHS England should work with partners to develop a shared plan on how to deliver high quality information which has a meaningful impact in helping people to feel empowered within their own care.


    4. Ensure impact: Embedding information within professional education such as communication skills training and dialogue/partnership working
    Health information and its use should be integrated into appropriate education, alongside support for the development of listening and shared decision-making skills among healthcare professionals. This should build on current guidance produced by the General Medical
    Council on partnership working between doctors and patients.

    Read the full report here: Is knowledge power? Using information and support to empower patients

    We would be grateful if you could support us by extending the reach and visibility of this report and its recommendations among your internal team and external network. For example:

    Via Twitter: 5.5m patients with LTCs are missing out on vital information at diagnosis: http://www.pifonline.org.uk/5-5-million-patients-are-estimated-to-have-missed-out-on-vital-information-at-diagnosis/  @PiFonline #Isknowledgepower

    On LinkedIn: Please share the report by clicking: https://www.linkedin.com/pulse/55-million-patients-estimated-have-missed-out-vital-diagnosis-forum?trk=hp-feed-article-title

    It is imperative that we see the launch of this report as the start of increased public discussion and pressure to ensure that we see action to deliver on the NHS Constitution guarantee of access to appropriate patient information.