Practical tool to address real patient information needs

Everyone benefits when patients are informed and empowered – we know that. Adherence rates are higher, services run smoother, outcomes are stronger. But how can such a vast network of stakeholders, from patients to healthcare professionals, advocacy groups to industry, all make sure they are pulling in the same direction?

The Patient Information Forum’s (PiF) recently published Perfect Patient Information Journey is a blueprint to achieving just that.

Developed with the support of AbbVie, it clearly sets out seven steps that health services can follow to improve information for people with long-term conditions.

These stages add up to working with patients and staff to map points on the disease trajectory to information needs and resources. In this way, gaps are identified and plugged.

It’s a way of utilising the communities of doctors, nurses, patients, charities and pharma that exist within individual therapy areas for the greater good.

“High-quality, clearly-communicated, evidence-based healthcare information, which is accessible and developed with its users, should be embedded throughout all care pathways in the NHS:  it should form part of every interaction between a patient and their healthcare professionals,” said PiF chair, Sue Farringdon.

To do this, industry, the NHS and advocacy groups should form partnerships to identify and create high-quality information that is mapped to key points on the “perfect patient information journey,” recommended the report.

The case for change

This new blueprint has been designed to address concerns raised by a PiF poll, which found 36 per cent of people with long-term conditions were not given helpful information when first diagnosed.

The survey of 1,500 people, published in the 2015 PiF report Knowledge is Power, also found that 32 per cent found it difficult to access trustworthy information on their condition. That figure rose to 58 per cent among 18 to 24 year olds.

One fifth of those asked said they didn’t have enough information to feel confident in discussing decisions about their treatment with their doctor.

Gwenan White, director of communications and patient relations at AbbVie UK, said the company had been working on various projects in a bid to understand and address information barriers.

“Having access to quality information is a big factor in how confidently people deal with health problems. The results of the PIF survey showed there is a big gap to fill,” she said.

She went on to say the findings had mirrored work by AbbVie last year, which examined the barriers that might stop people from seeking medical advice for symptoms.

The Fear of Finding Out identified eight reasons a person might not seek help for medical symptoms. These included concerns about being physically examined, feeling pressured to make lifestyle changes and appearing weak or ‘not in control’ – all of which were associated with poor health literacy.

Another barrier was the fear of stigma or discrimination, which remains an unmet information need.  This was shown in the case studies used to illustrate PiF’s Perfect Patient Journey, which were both based on inflammatory bowel disease (IBD) services.

“When conditions are associated with significant stigma and the symptoms very personal, such as in IBD, it may be particularly difficult for people to find the courage to seek advice or information.

“It is clear that how and when information is provided matters just as much as it being available at all,” said Gwenan White.

About the author: 

Amanda Barrell

Amanda Barrell is a health and medical education journalist, editor and copywriter. She has worked on projects for pharma, charities and agencies, and has written extensively for patients, healthcare professionals and the general public.