Creating health information that truly meets patient needs

It has never been more important to ensure people have access to trusted health information – and the whole health sector must work together to make it possible. The Patient Information Forum’s Sophie Randall tells us how her organisation’s new accreditation scheme is hoping to achieve this.

From 5G conspiracy theories to misguided advice on disinfectant, misinformation around COVID-19 has reached endemic proportions.

It’s a fortunate accident, then, that the Patient Information Forum’s (PIF) new health information accreditation scheme was launched last week.

Sophie Randall, the organisation’s head of strategy and partnership, says: “There is so much misinformation around COVID-19 and it’s coming from all sorts of sources. You’ve only got to look at things that have been circulating on social media to see it’s a real problem.

“It’s really important that people are able to see that something is trustworthy and valid at the moment.”

The PIF TICK (Trusted Information Creator Kitemark), developed after NHS England announced the demise of its Information Standard Kitemark, has been presented to 11 organisations following a six-month pilot process which was sponsored by BUPA.

“If there are elements of the code that are preventing pharmaceutical information from being patient centric and health literate, then maybe the code needs to change ”

Accreditation is based on an organisation’s health material production process, which PIF assesses against a set of key criteria covering, among other things, health literacy and evidence-base.

Big name backing

PIF TICK-bearing organisations include patient groups, such as Cancer Research UK and Anthony Nolan, NHS Trusts, including Royal Bournemouth and Christchurch Hospital and Guy’s and St Thomas’, and the Royal College of Anaesthetists.

Dozens more organisations, the Follicular Lymphoma Foundation, The Motor Neurone Disease Association and The Macular Society included, have signed up to earn the right to use the mark on their leaflets, websites, apps and videos.

The hope is that the scheme will eventually come to represent a cross-sector consensus on how to create evidence-based, health literate materials that truly meet patient needs.

Sophie says: “There are so many different types of organisations producing health information. What we are trying to achieve is a common standard that everyone can apply and that the public can recognise.

“We did some market research and found that 80% of the people who responded were in favour of having a mark, felt it was needed, and felt they needed to be able to easily recognise trustworthy information.”

While pharma is already highly skilled at providing evidence-based information, there is a growing understanding within industry that materials also need to be accessible, she says.

“One of the things that COVID-19 has really highlighted is how important health literacy is. Materials don’t just need to be evidence based, they also need to be easy to use and understand.

“Industry has been under pressure from the EMA to improve the health literacy of prescribing information and packaging leaflets. We know that is complicated because of regulation, but we also think they can rise to the challenge,” says Sophie.

To this end, a central part of the PIF TICK’s accreditation process is the requirement for content producing staff to undergo training.

“Sometimes there is a feeling that anyone can ‘do’ health information, but they can’t. It’s a specialist skill with some real core competencies around writing in plain English,” says Sophie.

Industry involvement

Expanding the PIF TICK to pharma is the next stage of the programme. Sophie sits on Janssen’s Patient Advisory Committee and says the company was currently evaluating how it could take part in the scheme.

“One of the most important things we think pharma can do to be patient centric is to look at user involvement in material development, but we all know that there are blockers in terms of the Code of Practice.

“We understand pharma companies face a very different regulatory framework to anyone else in the health sector, so what we would like to do initially is test how we can work with companies within the criteria that have been set.”

Industry as a whole is keen to embed the patient voice into material development processes, but overcoming Code-related concerns is a crucial first step, she says.

“Information goes right through the pharma lifecycle, from clinical trial consent forms to patient support programmes, taking in all the product leaflets and prescribing information in between.

“Some companies are attempting to make real strides towards involving patients in material development, but there is a genuine fear around the limits of what they are allowed to do.”

Engaging with PIF on this, she hopes, will help companies to overcome this barrier and help the whole sector move as one.

Validated national standard

“We have a national standard that people can work to. We have developed it with our membership, have tested and validated it, and have some really major health brands behind it.

“Now we want to make it work in pharma. It may be that we find real blockers, but we don’t know exactly what they are until we’ve tried.

“And if there are elements of the Code that are preventing pharmaceutical information from being patient centric and health literate, then maybe the Code needs to change,” says Sophie.

  • PIF is currently accepting expressions of interest from pharma companies wishing to find out more about getting involved in the scheme. For more information, contact wills@pifonline.org.uk
  • More information is available at org.uk/piftick