Why we need a sector-wide emphasis on accessible health information

Views & Analysis

In the quest to provide evidence-based health information, the importance of understandable, accessible materials can get lost in translation. But ‘medically accurate’ and ‘health literacy appropriate’ are not mutually exclusive, says the Patient Information Forum (PIF).

In an era of fake news, it’s the whole sector’s responsibility to ensure people have access to the trusted health information they need to make informed decisions about their treatment and care.

And while there’s no denying that materials should be evidence based, they also need to be accessible, says Sophie Randall, PIF’s projects and partnerships manager.

“There’s no point providing people with information if they can’t understand and act on it,” she says, adding that some information intended for patients was written as if it had been produced for healthcare professionals.

“At best, only the most able people will be able to understand that kind of information. But we have to remember that even the most able of people can be in such a state of shock when facing a diagnosis that their ability to absorb information is limited.”

That’s equally true throughout the disease trajectory, especially when you consider that between  43% and 61% of English working age adults do not understand the health information they are provided.

“There is so much health inequality in this country, and to start to address that we need to make sure health information enables people to act and to make decisions about their health”
Sophie Randall

High standards

That’s why when NHS England announced the demise of its Information Standard kite mark, PIF members, including NHS trusts, patient groups and private sector companies, were quick to step into the breach.

For the past 12 months, they have been working together to develop the draft criteria for PIF’s new Kite Mark accreditation scheme for organisations that produce health information.

Randall says: “People can still work towards the NHS England Quality Standard, but our members really wanted a mark that would quickly demonstrate to the public that the information they are providing is fundamentally trustworthy.

“That is so important, particularly at the moment when there is so much fake news and misinformation out there.”

The draft criteria, currently being piloted by 12 organisations including Bupa, Macmillan Cancer Support, MIND and Guy’s and St Thomas’ NHS Foundation Trust, place a heavy emphasis on accessibility.

“We felt that some materials that had the old information standards mark perhaps weren't as health literate as they could be. The old criteria placed so much emphasis on evidence, which is obviously extremely important, but there also needs to be a focus on usability,” says Randall.

“There is so much health inequality in this country, and to start to address that we need to make sure health information enables people to act and to make decisions about their health.”

The new accreditation will also ask accredited organisations to measure the impact of the information they are providing, in a bid to ensure it is meeting patients’ needs.

“We really want it to be practical,” says Randall, adding the pilot would lead to a revised set of criteria. These will be finalised in January, with the scheme being rolled out in March.

Pharma’s role

Another conversation the pilot will inform is how industry will work with the Kite Mark, which has been designed for information producers.

“Obviously, most of pharma’s health information is produced externally,” says Randall.

Currently, pharma companies can use PIF’s Sounding Board Service, by submitting materials to the group’s review board to be assessed for, among other things, tone of voice and health literacy.

The board, which has reviewed both digital and paper-based projects, provides detailed feedback and advice on each submitted piece of information, and issues a “reviewed by PIF” sticker to those that hit the mark.

“The main difference between the two schemes is that the Kite Mark will accredit the organisation as the information producer, whereas the Sounding Board reviews and provides feedback on a specific piece of patient information,” explains Randall, adding the service was available on an ad-hoc basis or as part of PIF’s industry partnership programme.

Agency training

PIF wants to take this work one step further and hopes to use what it learns from the Kite Mark pilot to launch an accreditation scheme for the agencies that produce pharma’s patient information.

Still in the planning stages, it would provide training on health literacy, writing for patients, and risk communication, as well as help agencies to establish patient centric information production processes.

“Providing trusted, accessible information is part of industry’s obligation to patients – as many companies understand,” says Sophie, adding that providing incorrect health information could be as dangerous as prescribing the wrong drugs

“It’s also really important for things like adherence and compliance. How can you adhere to a treatment if you don't really understand why you're on it or how you should take it properly?”

Put simply, she concludes, companies cannot claim to be patient centric if the materials they provide do not meet the needs of the people who use them.