PIF took the first steps on the Perfect Patient Information Journey at St Mark’s Hospital in North West London. Information gaps identified by steps 1 - 4 of the process are being addressed by new information interventions. These include the set-up of a new diagnosis clinic; the introduction of a flare card; a review of the hospital’s patient booklet to improve awareness of services; and better signposting to Crohn’s and Colitis UK’s information and support.

The pilot is entering the second stage to evaluate the impact of the changes made using Patient Activation Measures (PAM), healthcare utilisation data and tracking activity to Crohn's and Colitis UK's information from a web-based digital signpost. The St Mark's project has involved a partnership with Crohn's and Colitis UK, and funding has been provided by AbbVie. NHS England has provided Patient Activation Measures licenses to support the project.

The PPIJ process is also being used by the Dorset Macmillan Cancer Information project, part of the Dorset Cancer Partnership. PIF provided specific advice on impact and evaluation measures.

Interim results on the St Mark's project were the subject of three poster presentations at 19th Congress of the European Crohn's and Colitis Organisation in Vienna in February 2020. The project was also part of Parliamentary showcase on support for Shared Decision Making hosted on 10th March by Martin Vickers MP.

The full report and findings will be launched at a PIF event in November 2020 which will showcase best practice in evaluating the impact of health information. 

It’s been a very interesting and insightful experience for the whole team. It gave us the opportunity to reflect on patient information, its role in disease management, and how information is communicated to patients. I found the PIF team to be very knowledgeable with good insight into patients' needs, and I thoroughly recommend them to future services.
Dr Naila Arebi, Consultant Gastroenterologist, St Mark's Hospital

PPIJ is an essential priority for PIF

PPIJ is an essential priority for PIF and supports the integration of patient information within health services.

The Phase 1 report published in May 2017, combined a literature review with the findings of focus group discussions with patients and healthcare professionals to identify what was necessary for a Perfect Patient Information Journey.

Phase 2 of the project took the findings and recommendations of the first phase research and applied them in practice in two pilot projects at St Mark’s Hospital, North West London and Hereford County Hospital Trust.

The result of this work was the development of a practical 7-step process. 


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The Perfect Patient Information Journey Phase 1 and 2 reports are available for download here or in Resources.

PPIJ interim research cover image

Interim research posters from the phase 3 pilot at St Marks

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