I joined the Patient Information Forum (PIF) in 2009 shortly after taking on the management of a patient information service at a hospital in Greater Manchester. 

PIF was an invaluable source of support, particularly in a role when I was the only member of staff in a volunteer-led service, helping reduce professional isolation.

Throughout my three years at the hospital, and in subsequent roles in the NHS and national charities, PIF has been a crucial source of support, ideas, advice, contacts, resources, inspiration and much more.

I believe PIF offers something unique. 

With membership from people involved in every stage of the information journey and from all sectors, its diversity of membership is its strength. 

It achieves so much, with such a small team of staff.

'We should embrace, not fear, new technology'

It has been interesting to observe how health information has evolved and how PIF has responded.

The changes I have observed include an increased role for volunteers, a less paternalistic approach with patients increasingly able to access information themselves (at a time to suit them), coupled with issues of digital literacy and access. 

The concept of physical space has been challenged over the last couple of years, with many wishing they had shares in Zoom!

The reduction in the number of public libraries and public library staff must have a negative impact, maybe not realised for some time. 

This is particularly so for those without access to books and a culture of reading at home.

We must acknowledge the importance of information literacy as a foundation for health literacy.

Increased ways of accessing information through such things as voice activated devices, and user created content will only increase and services need to respond. 

While I don’t expect too many people will conduct minor operations themselves through watching YouTube, we should embrace and not fear new technology.

Caring for the carers

The importance of quality and the patients’ ability to determine the difference between, and benefit of, different sources is something PIF excels at. 

However, in a free market for information it will be challenging to stay ahead of expectations. 

I still eat at a fish and chip shop that has a ‘best chippy 2016’ sticker in its window.

There are clearly wider issues at play that compete with the provision of high-quality health information, which are probably beyond the remit of PIF. 

We are living at a time when the availability of, and means of accessing, health information has never been greater.

At the same time the health status of our country means we see wide variants in life expectancy and too high, and rising, numbers of people with such conditions as diabetes, obesity, and mental health issues with their impact on individual health.

We are providing information to a population that is living longer, but with a range of health conditions, not least dementia. 

It is not that rare for older ‘children’ to be caring for very older parents, often with different health needs. Caring for the carers will continue to be important.

Changing attitudes as well as services

Other challenges are the status of people working in patient information with roles, particularly in the NHS, varying greatly. 

Other than health library and/or knowledge roles in the NHS, often focused on staff rather than patients, there is no recognised professional status or qualification for patient information producers or providers.

People are accessing information in different and often multiple ways, sometimes in short bursts whether via a short video or Twitter feed. 

Traditional long-form patient documents may not be enough.

Cultural issues are increasingly important – from #Metoo, to Black Lives Matter and with more people identifying as a gender different to the sex they were born with. 

This is important for producers and providers of information to patients and for any service provider.

It is now possible, for instance, for a trans woman to have prostate cancer, or a trans man to be pregnant meaning new ways of writing health information are needed.

This is part of wider developments within the area of equality/equity, diversity, and inclusion, which, while not new, does mean that all service providers need to be more aware and willing to adapt their attitudes and behaviours, as well as their products and services.

Co-production with users

Co-production of services is an increasing issue. 

I recall asking a group of patients what they thought of the colour of the sofas in a reading room in the patient information centre. 

The response was ‘who said we want sofas’. Due to their impairment, getting up from a sofa was difficult. 

An important lesson, that I will never forget.

I believe people are more critical and questioning and websites such as Trip Advisor are evidence of this in the travel world, but also seen elsewhere with many transactions being followed up with a feedback survey. 

The ability to share your opinions with many people around the word instantly is significant.

This combined with cultural issues, emerging technology, personalisation of what people read, hear and see and personal health challenges, and their implications, means the next 25 years is going to be challenging, but interesting.

I have no doubt that PIF will rise to the challenge and do what it always does – not just respond to change but lead the change. 

I look forward to being on that journey.

See more

How health information in Scotland has evolved over 25 years

Published:
22nd June 2022
Read More

Exploring the history of The King's Fund

Published:
22nd June 2022
Read More

In conversation with PIF co-founder Mark Duman

Published:
16th June 2022

We talk to PIF co-founder Mark Duman about why PIF was started, the need to understand patients on an individual level and fully integrating health information…

Read More

Keeping health literacy in the spotlight: a strategic approach

Published:
16th March 2022
Read More

Measuring your impact – why bother?

Published:
8th March 2022
Read More

Health Information Challenges and Solutions Workshop spring 2022

Published:
3rd February 2022
Read More

Judging the quality of YouTube videos on COVID-19 – lessons learnt

Published:
3rd November 2021

PIF member and freelance writer Louise Coghlin investigates the quality and reliability of YouTube videos on Covid and Covid vaccines.

Read More

A year of progress on health and digital literacy

Published:
27th October 2021
Read More

Promoting evidence-based health information

Published:
20th October 2021
Read More

PIF TICK – one year on and looking to the future

Published:
9th June 2021
Read More

The Perfect Patient Information Journey (PPIJ) and integrated public private pathways

Published:
22nd April 2021
Read More

Digital exclusion in the time of COVID-19

Published:
31st March 2021
Read More

Health Information Challenges and Solutions 2021

Published:
25th March 2021
Read More

PIF: A year in review

Published:
6th January 2021
Read More

Engaging Long COVID patients

Published:
30th November 2020

Patient Safety Learning looks at some of the concerns facing people living with Long COVID.

Read More

Health Information Challenges and Solutions

Published:
25th November 2020

This week PIF held its Health Information Challenges and Solutions Workshop online for the first time.The open space event is a chance for members to…

Read More

Transforming healthcare through number confidence

Published:
18th November 2020
Read More

'Together we can continue to ensure we move to a health literate world'

Published:
6th October 2020
Read More

Using behavioural insights to encourage a return to care

Published:
14th September 2020

Lack of information and fear of Covid-19 is preventing some patients from getting the healthcare they need. Applying behavioural insights to information…

Read More

Finding credible healthcare information

Published:
15th July 2020
Read More

Why is health information important to me? It isn’t just my job

Published:
7th July 2020
Read More

Key practice points on user engagement

Published:
25th June 2020
Read More

Supercharged Superhero by Gemma Everson

Published:
8th April 2020
Read More

Event report – Using digital tools to maximise health information

Published:
6th March 2020
Read More

Children's book aims to raise awareness of invisible illnesses

Published:
14th January 2020
Read More

Making digital services accessible

Published:
18th December 2019
Read More

Event report – Health Information for Children and Young People

Published:
14th November 2019
Read More

Is digital and social inclusion key to transformational change?

Published:
15th October 2019
Read More

Patient information a ‘linking thread’ at NHS Expo 2019

Published:
12th September 2019
Read More

Health literacy challenge and the NHS Long Term Plan

Published:
2nd September 2019
Read More

Developing health information to engage everyone

Published:
2nd July 2019
Read More

Patient-centred care: all in this together

Published:
11th April 2019
Read More

EU clinical trial sponsors to publish lay-friendly summaries of key findings

Published:
11th April 2019
Read More

Build trust and confidence to engage with seldom heard groups

Published:
4th April 2019
Read More

NHS plan promises empowered and informed patients via digital tools

Published:
11th January 2019
Read More

Changes in health information over the past 21 years – and the outlook for the future

Published:
4th January 2019
Read More

Health Information. How has it changed over the last 21 years?

Published:
4th January 2019
Read More

Vlog: Celebrating 21 years of health information

Published:
14th December 2018

Listen to Ellie Rose, Patient Information Editor at the Royal Marsden NHS Foundation Trust, vlog about what she finds useful about her…

Read More

Being heard above the noise

Published:
11th December 2018
Read More

Developing information for older people with long-term health conditions

Published:
30th November 2018
Read More

Reviewing public information issued by health and social care bodies

Published:
27th November 2018
Read More

Industry needs to work in partnership with patients and groups

Published:
22nd November 2018
Read More

Measuring and evaluating the impact of health information

Published:
22nd November 2018
Read More

Wales moves towards a digital health future for all

Published:
15th November 2018
Read More

Helping the #HiddenHalf – health information for maternal mental health

Published:
13th November 2018
Read More

Patients encouraged to ask professionals about medicines

Published:
4th October 2018
Read More

Users views needed on digital health records

Published:
26th September 2018
Read More

Getting health information right impacts health outcomes

Published:
20th September 2018

Blog by Amy Corkery – Editor, Patient Information, British Heart Foundation

Read More

Shifting the goalposts: the quest for a digital NHS

Published:
16th June 2017
Read More