• 5May

    Improving access to information: New PIF report – Perfect Patient Information Journey

    PIF is delighted to publish a Summary Report of Phase 1 of our Perfect Patient Information Journey project.

    A key plank of PIF’s mission is to campaign for high quality healthcare information and support to be an integral part of the patient journey.

    PPIJ Summary Report May 2017In light of the growing move towards supporting people with long-term conditions to self-manage and share in decision-making about their care, PIF has launched a project aimed at creating a model pathway to support the ‘perfect patient information journey’ for people with long-term conditions.

    The project aims to:

    • Identify good practice principles to ensure the provision of high quality information for people with long-term conditions.
    • Develop resources aimed at supporting patients, healthcare professionals and commissioners to better access, provide and commission high quality information.
    • Pilot and evaluate these resources in a clinical setting.

    The first phase of the project involved conducting research on previous efforts to embed information into patient pathways, as well as talking to patients, healthcare professionals and commissioners, to identify key themes related to the provision of high quality information.

    Ten key points were identified:

    1. Information on first diagnosis is essential.
    2. Information on first diagnosis can also be overwhelming.
    3. Information needs change as people move along the pathway.
    4. Every patient pathway is different, but there are certain points along each pathway where information is essential.
    5. It’s obvious, but information must be tailored to the needs of the individual.
    6. Being supported to ask questions is vital.
    7. ‘Dr Google’ can be a problem, but patients generally know how to filter online information.
    8. Local leadership and information champions are needed.
    9. Healthcare professionals want to do more, but time is a barrier.
    10. Commissioners want to do more, but need the evidence

    The full summary report from Phase 1 of the project, covering the key findings from our research and recommendations, can be read here.

    Launching the report PIF’s Chair, Sue Farrington, said:

    “This report brings together the experiences of people with long-term conditions, healthcare professionals and commissioners, to begin to create a map for how we can support health services to embed the provision of good information into their care pathways and improve the patient experience. We are looking forward to testing our findings over the next six months, to evidence the impact of providing better information and develop tools that support health services to deliver this.”

    The next steps in the project for PIF are:

    • Develop a Patient Information Commissioning Toolkit to raise awareness of the evidence and policy drivers that support the commissioning of high quality information.
    • Develop a series of resources to support health services measure and improve how they provide information to service users, informed by the principles outlined in this report.
    • Deliver a pilot of the resources, and evaluate the impact to service users, and the service, in improving the provision of health information.

    The pilot stage of the project will begin next month and we look forward to sharing the results towards the end of 2017.  Based on the experiences to emerge from the pilot, the findings from good practice research and subsequent recommendations, PIF will aim to campaign at local and national level for a greater policy focus on ensuring effective access to healthcare information.


    This project has been supported by an unrestricted educational grant from Abbvie.