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 Journey

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Policy Background to the Perfect Patient Information Journey 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.  The landmark ruling of Montgomery vs Lanarkshire case of March 2015 drew fresh attention to informed consent.

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.

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.

A 7-step process for health services to develop a Perfect Patient Information Journey

PIF’s Perfect Patient Information Journey project aimed 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.

PIF-PPI-JourneyThe final report of the project, published in June 2018, explored how healthcare services can develop a Perfect Patient Information Journey.

A Phase 1 report published in May 2017, reviewed the available academic evidence and focus group discussions with patients and healthcare professionals to identify what was necessary for a Perfect Patient Information Journey.

The Perfect Patient Information Journey (Phase 2) took the findings and recommendations of the first phase research and applied them in practice during two pilot projects at St Mark’s Hospital, North West London and Hereford County Hospital Trust.

PIF examined the patient information journey for people with Inflammatory Bowel Disease (IBD) treated at St Mark’s Hospital. Working with patients and healthcare professionals, we carried out a gap analysis to identify areas of need. The IBD pilot study showed how a wide range of information needs were revealed through the process of gaining patient and staff insights.

As a result of the work at St Mark’s, PIF developed a 7-step process to support healthcare services to develop and embed patient information across their pathways. By using this process, services can create a ‘Perfect Patient Information Journey’ and transform the information experience of patients in a matter of months.

These 7 steps are:

  1. Get the leadership team on board and clarify roles
  2. Find out what your patients think
  3. Find out what your staff think
  4. Map the current patient information journey and identify gaps
  5. Identify and make improvements
  6. Evaluate the impact of changes made
  7. Benchmark, review and maintain patient involvement in implementation of change.

The second pilot project at Hereford County Hospital, tested step 1 of the process. Both pilot studies demonstrated the importance of investing time in the process and in having clear leadership to drive improvements across an organisation.

The findings of both phase 1 and phase 2 of the ‘Perfect Patient Information Journey’ have been combined into a single set of recommendations:

  • Information should be at the forefront of healthcare service planning and delivery.  To ensure this happens, services should consider a patient’s information flow across their pathway by using the 7-step ‘Perfect Patient Information Journey’ process.
  • Healthcare services should ensure they have appointed a named senior level Patient Information Lead to ensure patient information is high-quality, easy to understand and accessible.
  • Healthcare professionals should signpost patients to high-quality, accessible sources of information throughout their patient journey.
  • Patients should be supported to ask questions to help them to take an active part in their care and share decisions, for example through decision aids or checklists.
  • Services should evaluate the impact of the information they are providing and make improvements where identified.
  • NHS England and the Care Quality Commission should set clear national standards for information provision for healthcare services.
  • Industry, the NHS and advocacy groups should form partnerships to identify and create high-quality information mapped to the key points on a ‘Perfect Patient Information Journey’ in individual long-term conditions.

The full report is available here: PPIJ-25Jun18.pdf

Next Steps in PPIJ (updated 03/12/18):

New projects to support the final steps on the Perfect Patient Information Journey (PPIJ) are underway. The final phase of the project will focus on evaluating the impact of health information improvements.

Following our work with St Mark’s Hospital over the last 18 months, they have introduced information improvements and PIF is working with the team to develop a research project to measure the impact of new interventions. Patient Activation Measures, healthcare utilisation and a validated IBD quality of life score are measures under consideration.

PIF is also working in a critical friend capacity with Dorset Cancer Partnership on the impact of improved information provision journeys for cancer patients. The aim is to develop templates to enable the evaluation of impact of health information.

[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 grant from AbbVie.

Information prescribing project in Nottinghamshire

RECAP Health is a digital product resulting from a partnership between Nottinghamshire Healthcare NHS Foundation Trust and Health2Works. The Patient Information Forum (PIF) has joined the partnership and has recruited five health charities to contribute. Asthma UK, Alzheimer’s Research UK, Crohn’s and Colitis UK, Diabetes UK and Parkinson’s UK have all provided information and resources to the pilot which runs for six months from January 2019).

“In a nutshell the RECAP system is a digital patient information distribution and impact measurement system. Clinicians can efficiently ‘prescribe’ patient information. Patients become better informed and better able to manage their health effectively. Trusts see extra quality and efficiency gains and are able to measure the impact of the information provided on a patient’s ability to self-care effectively,” said Steve Pashley, RECAP Health.

“We recognised NHS Trusts needed help acquiring and organising high-quality patient information and that’s something PIF and its members do really well, day in day out. Putting the two together means we can, for the first time, efficiently offer frontline clinicians convenient access to the work done by professional healthcare content providers for the benefit of millions of patients and their carers and measure the impact of this over time.”

The pilot scheme will be yet another way for the charities to communicate vital health advice to patients.

“Timely access to high-quality, accurate, evidence-based healthcare information provides a robust platform from which patients and healthcare professionals can engage in a shared partnership to improve health outcomes. Barriers to providing and signposting of information include lack of resources within Trusts, lack of a defined process and leadership for patient information, lack of storage space and information stands, infection control and governance issues,” said Sophie Randall, Project and Partnership Manager at PIF.

“This means that awareness of patient support groups among people with long term conditions can be low, denying them access to much needed information and peer support, fundamental to successful self-management. We hope this pilot will change that.”

Rezaul Mirza, Primary Care Engagement Officer at Diabetes UK said: “We look forward to engaging patients with our Information Prescriptions, on the RECAP library, to promote better self-management of diabetes.”

Claire Lucas, from Alzheimer’s Research UK, said: “We are delighted to be part of this pilot scheme. As the UK’s leading dementia research charity, a key part of our remit is to raise awareness of dementia and the diseases that cause it, tackling the misunderstanding and stigma that are still commonplace in society. This new route to providing evidence-based, accurate and up-to-date information about dementia to people affected by the condition and their families can only help us in this aim.”

For more information on RECAP Health visit

Shared-decision making update

The Health Literate Shared Decision-Making Framework, produced by PIF and the Community Health and Learning Foundation, for NHS England, is currently being piloted in Nottinghamshire. The trial of the framework is expected to run until March 2019 with a period of evaluation to follow. In the meantime, PIF attended the first scoping workshop on the NICE Guideline on Shared Decision Making on 3 December.