2017 has been a busy and exciting year at PIF.
From trending on Twitter with our event on health information for children and young people, to judging and presenting at the BMA Patient Information Awards, and hosting a Westminster meeting with the All Party Parliamentary Health Group, we’ve seen our voice and impact continue to grow.
Here are some of our highlights!
A bumper year of events
This year we’ve held 9 themed events, attended by 376 people.
We’ve shared exciting projects, best practice and top tips on creating digital health information, involving users, accessible information, personalising health information, and health information for children and young people.
We also held an event in partnership with CILIP for health librarians, and spent a great day in Glasgow exploring health information projects in Scotland.
98% of people who participated in our events this year said their objectives in attending were completely or partly met.
One of the most popular elements of our events are the networking sessions. We really enjoy bringing people together, all working with in different sectors and roles, on different condition/disease areas and with different communities, but who share a commitment to making sure the information support they provide is as good as it can possibly be. As one delegate said:
“I loved the energy, the shared goals to develop better health information, lots of great ideas, and building contacts for the future.”
Measuring the impact of information
One of PIF’s strategic aims is to promote the need to evaluate the impact of high-quality health information. This year we held three events, in partnership with NHS England’s The Information Standard, to identify the key challenges and opportunities for information producers and providers when measuring the impact of their work.
We bought together 80 people from across the health information sector, to discuss how we can better understand and evaluate the difference health information makes.
The meetings generated many conversations and identified three priority areas for actions:
- Develop a shared approach to impact measurement for health information.
- Creation of Toolkit with best practice, top tips, tools and case studies to provide practical support and guidance.
- Engagement with the wider health system to support better measurement.
In 2018 we will be talking to potential partners about how we can progress these priorities.
Learning about perfect patient information journeys
In April we launched the report from phase 1 of our Perfect Patient Information Journey project.
This shared research with long term condition patients and health care professionals, to understand the challenges in accessing health information support, and opportunities for improving how information support is integrated into health care and services.
The report identified 6 key points for better information provision:
- Information on first diagnosis is essential.
- Information on first diagnosis can also be overwhelming.
- Information needs change as people move along the pathway.
- Every patient pathway and experience is different, but there are certain shared points where information is essential. For example when there is a change in the condition, or a decision needs to be made.
- It’s obvious, but information must be tailored to the needs and situation of the individual.
- Being supported to ask questions is vital.
It made a series of recommendations for health services and commissioners to improve the integration of health information into the provision of health services. You can read the full report here.
Over the last few months we’ve been working with a number of clinical services to test out findings from the report in practice. We will share the results in Spring 2018.
Personal health records
In January we launched a new guide sharing the experiences of people who have first-hand experience of developing or using Personal Health Records.
Personal health records (PHRs) are a digital space for people to record and engage with their health and care information.
Our guide shares real life examples of how PHRs could impact people’s health and wellbeing, and change health services.
In the guide Ingrid Bridle, long-term patient and Chair of her GP Patient Participation Group in Tameside, talks about how online access to GP records benefits her:
“Using my GP records gives me such a wonderful feeling of control over my stuff. It’s so liberating being able to make appointments, order repeat prescriptions and see test results for myself. You can do all that through your record.”
The guide discuss aspects of PHRs that the people we spoke to highlighted as being the most important, and concludes with a checklist of key things to consider.
Our membership grew in 2017 and we end the year with 630 members representing over 300 organisations from across the UK.
Many of you have used our online discussion groups to share your challenges and expertise, and the PIF website has hosted 71 active conversations over the last 12 months.
Thank you to all members who took part in our membership survey in the summer. 82% of you replied that PIF membership provides value for money, and 89% would recommend PIF membership. 76% of you replied that membership directly supports your work and that of your organisation.
You told us that you value how we keep you up to date with the latest developments and projects in health information, and how PIF membership connects you with a community of people working on similar priorities and facing shared challenges.
You want us to deliver training opportunities that are more widely accessible, including webinars and events at locations beyond London.
You also told us that using the PIF network to build connections with communities for engagement in project development and evaluation would be valuable.
We are exploring how we can take the findings from the survey forwards and will share our plans in PIF Aware.
Our work in 2017 has only been possible thanks to the involvement of our members. So a massive thank you to all of our members for your continued support!
The ultimate aim for all our activities is to improve people’s experiences and understanding of their health, wellbeing, treatment and care. We are looking forward to continuing to work with our network over the coming year and delivering on our strategic aims of quality, integration, expertise and impact.
Our plans for 2018 focus on continuing to champion the importance of health information, and share expertise in delivering high quality information support. Alongside our weekly PIF Aware bulletins and discussion forums, our work will include:
- Delivering events on communicating risk, health literacy and involving excluded groups.
- Collating and sharing best practice on measuring the impact of health information.
- Launching the findings from our Perfect Patient Information Journey project.
- Updating the PIF Toolkit.
- Growing the PIF network to engage wider audiences across then health sector.
So long 2017, and we look forward to a busy and exciting 2018!
We would like to say a special thank you to:
- Our Board members – old and new
- Our Advisory Group
- PIF’s Partner organisations
- The patients and healthcare professionals who were part of our Perfect Patient Information Journey project, and Abbvie for supporting the project with an unrestricted educational grant.
- To all the speakers who contributed to our events.
- The National Information Board for supporting the updating of our Guide to Personal Health Records, and Louise Coghlin for researching and editing the new edition.
- NHS England for supporting our Accessible Health Information and Measuring Impact events.
Posted on Friday, 15th December 2017