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.