On 28 June 2018, the Patient Information Forum was delighted to hold an event, supported by AbbVie, to launch the final report of a project which has explored how healthcare services can develop a Perfect Patient Information Journey (#PPIJ).
There was a wide mix of sectors and organisations represented in the audience and the day was chaired by Sue Farrington – Chair, Patient Information Forum.
A person’s right to information to inform their care is enshrined in the NHS Constitution. But patients still report they are not receiving the information and support they need to make informed decisions about their health and wellbeing. In a survey of 1,500 people with long-term conditions, 36% said they did not have enough information when first diagnosed and this figure rose to 58% for 18-24 year olds.
The first speaker of the day was Zoë Horwich – Sustainable Healthcare Lead, AbbVie UK who gave us the background of the Perfect Patient Information Journey project, how AbbVie has supported it and why they felt it was so important for patients. The Sustainable Healthcare initiative includes projects that create patient-centric healthcare, and events that bring people together to make a remarkable impact on the health service.
Prof Martin Wilkie – Consultant Renal Physician, Sheffield Teaching Hospitals NHS Foundation Trust was next, talking about the value of good information support. Martin told us about Yodda – a patient decision aid – developed with the patient in mind at each step and Share HD for haemodialysis patients.
We then heard more details about the Perfect Patient Information Journey project from Jane Cox – Policy and Public Affairs Adviser, PIF. What is the Perfect Patient Information Journey?
The 7-step process outlined in this report is a blueprint to support services to review and improve their provision of patient information and create a ‘Perfect Patient Information Journey.’ Jane explained that the 7-step process outlined in this report is a blueprint to support services to review and improve their provision of patient information and create a ‘Perfect Patient Information Journey.’ The Patient Information Forum believes that this on-going cycle of improvements to patient information across patient pathways will be of significant benefit to patients, healthcare staff and the NHS.
By having a named senior lead responsible for patient information and conducting insight work with patients and staff, health services will be able to identify gaps in information provision and any additional resources that need to be developed or signposted to. The pilot studies featured in this report demonstrate that information gaps exist even where patient information is prioritised.
Working with patients to identify their needs also uncovers new ways to allow patients to better self-manage, for example if they suspect a flare. Filling this particular information gap improves care for patients and allows flares to be treated sooner, avoiding more costly interventions.
After a break and session of speed networking where everyone was encouraged to talk to someone they didn’t know, we heard from Trishna Bharadia – Speaker, Writer, Advisor and Expert Patient (MS & Chronic Illness) who gave us the patient perspective on the information journey and how important it is to access information at the right time. Trishna is a patient advocate who is involved with stakeholders from all sectors, including writing lay summaries of clinical articles.
Trishna spoke eloquently about the ‘why’, ‘how’, ‘where’ and ‘what’ when it comes to patient access to health information. When she was first diagnosed, most of her information-seeking was paper-based, now it is mostly online. “77% of people seeking health information start with a search engine like Google”.
The next speaker was Dr Rishi Fofaria – IBD Clinical and QI Research Fellow, St Mark’s Hospital, LNWUH NHS Trust where the first pilot for the Perfect Patient Information Journey was undertaken. Dr Forfaria gave an overview of a real-life example of identifying information gaps amongst physicians and patients with Inflammatory Bowel Disease at St Mark’s Hospital.
He explained that going through the 7-step process with PIF and listening to patients gave them the opportunity to spot gaps in information provision and develop innovations. He also felt that the evaluation process had been invaluable to demonstrate the benefits to patients and added that “Activated patients experience better health outcomes”.
“I found the PIF team to be very knowledgeable with good insight into patients’ needs and I thoroughly recommend them to future services.” Consultant Gastroenterologist, St Mark’s Hospital on the PIF facilitation of the 7-step process.
After lunch we had some table group discussions, each table tackling a different question about how we might achieve Step 1 of the 7 steps: Get the leadership team on board and clarify roles. Interestingly most tables focused on implementing the Perfect Patient Information Journey in an NHS Trust as their example for this exercise and there were many good points discussed around clarifying the patient voice, using existing patient groups and case studies with quantifiable benefits emphasised.
The first speaker of the afternoon was Amy Corkery – Editor, Patient Information, British Heart Foundation telling us about BHF’s New Patient Information Programme. Amy’s presentation focused on how the BHF have re-developed their risk factor and behaviour change print and digital information into a new portfolio with a ‘patient first’ approach. Listening properly to patients about the design and content of their publications has led to a dramatic decrease in their printed materials and a large cost-saving. Their new resources will be available soon.
After another short break, we had a double-act on stage with Dr Nick Harvey – GP and Chair of South Downs Health and Care, South Downs Health and Care GP Federation and Andrew Cockayne, Managing Director – Captive Health. Nick and Andrew explained how they have developed a new mobile information platform for primary care which has demonstrated many early benefits to patients already after being piloted in one GP practice. The app includes a large amount of content including local services and clinics and text message alerts at different stages for long term conditions.
The final speaker was Dr Anne T Bruinvels – Founder, Px HealthCare Ltd who told us about the issues that people affected by cancer experience and how the award-winning mobile app OWise supports patients by providing them with personalised medical information, a tailor-made list of questions to help them prepare for doctor’s visits and real-time tools to record and share their well-being and side effects.
These Patient Reported Outcomes (PRO) are important for both patients and clinicians as they give people insight into how patients perceive their treatment and inform clinicians if the treatment needs to be adjusted. This has been shown to improve patients’ quality of life and avoid unnecessary hospitalisations. OWise is freely downloadable and will be developed for other cancer types in the very near future.
The engaging day was brought to a close by Sue Farrington who thanked the speakers, AbbVie and the participants and everyone collected their copy of the new Perfect Patient Information Journey report as they left, feeling inspired!
New PIF Service
The Patient Information Forum is able to offer support for organisations wishing to implement their own Perfect Patient Information Journey. Please contact Sophie Randall at PIF to discuss: firstname.lastname@example.org.
Here is where you can find out more information about the Perfect Patient Information Journey:
- View the press release for the report here
- Read about the background to the Perfect Patient Information Journey project here
- Download the full report here
- Presentations from the event are available here
Posted on Tuesday, 03rd July 2018