Current Projects

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The Patient Information Forum works alongside and in partnership with other organisations to improve the standard of health information and extend its reach. We also campaign to influence policy makers, health professionals and commissioners: to ensure that health information for patients and the public takes a central role in high quality patient care and that it is recognised as a service in it’s own right.

Developing a ‘perfect patient information’ pathway

doctor women screenPIF believes in the importance of information as a therapy in its own right, providing the foundation of patient-centred care, shared decision-making and self-management.

Recognising that access to health information and support is crucial to improving patient outcomes and unlocking what has been termed the ‘blockbuster drug’ of patient engagement, PIF has produced a number of reports and other resources aimed at examining the evidence, promoting its importance and providing guidance on content. These include:

Policy Background to the ‘Perfect patient information pathway’ Project

In a context of increasing numbers of people living with (often multiple) long-term conditions, health policy has become ever more focused on improving health outcomes and reducing costs by making a reality of concepts such as ‘self-management’, ‘shared decision-making’ and ‘patient activation’.

For example, a 2014 inquiry by the House of Commons Health Select Committee looked at ‘managing the care of people with long-term conditions’ and identified a ‘systemic and cultural shift towards greater personalisation of health and care services’,[i] with local authorities given legal responsibility for providing care and support plans, and a ‘House of Care’ model widely promoted that has at its heart more engaged, informed patients and personalised care planning.

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. In 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.

Despite numerous policy statements hailing the importance of information, the evidence shows that the NHS often still does not properly inform the patient, and though there have been a number of projects focused on testing out improvements in shared decision-making and care planning, none have specifically focused on how to achieve this by successfully embedding access to information right across the patient pathway.

Key Components

PIF’s ‘perfect patient information pathway’ project aims to move beyond encouraging rhetoric towards real progress, by creating a model of what successful access to information looks like in practice and testing this out in a clinical setting.

Based on the experiences to emerge from its pilot, the findings from its good practice research and its subsequent recommendations, PIF will aim to campaign at local and national level for a greater policy focus on ensuring effective access to healthcare information.

The project is broken down into four broad stages:

  • Defining good practice in embedding access to information across patient pathways, and providing a report summarising findings and making recommendations. This stage will include:
    • Desk-based research into existing case studies
    • Interviews and meetings with healthcare services that have undertaken relevant interventions focused on information provision, to draw out challenges and successes
    • Focus groups with patients and other stakeholders to draw out good practice and provide ideas on the most useful format for the pathway resources.
  • Designing a ‘perfect patient information pathway’ based on findings:
    • Initial ideas for this include a written and diagrammatic resource with clear recommendations for how to ensure information access (targeted at different stakeholders – from commissioners to professionals and stakeholders) containing ‘pull-out’ template documents for services to use.
  • Testing out the pathway in a clinical setting, for a specific long-term condition. 
  • Summarising the policy lessons to emerge from the project, which could be adopted across all long-term conditions, and campaigning for national-level change.

Perfect Patient Information Journey for People with Long Term Conditions

PPIJ Summary Report coverIn 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.

Then PIF news post launching the report, published on 5 May 2017, can be read here.

[i] House of Commons Health Committee (18th June 2014) ‘Managing the care of people with long-term conditions’, p.5. Available at:

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