Health Information Week runs from 3-9 July with the aim of promoting good quality health information to support patients, service users and the public. Claire Murray of the Patient Information Forum (PIF) explains why this is so important.
At PIF we have been campaigning for 20 years to improve the quality, accessibility and provision of health information.
We know that good health information is vital for supporting people to understand and make informed decisions about their health, wellbeing and care.
However, we also know that too many people are not able to access adequate information support.
In 2015 we asked 2,000 people living with long-term conditions about their experiences of being provided with information support.
Some 36% told us they had not had been given helpful information about their condition when they were first diagnosed, and 21% said they do not have enough information to feel confident in discussing decisions about their care with their doctor.
One patient commented: “I was asked to choose between two new courses of treatment, but I was just given their drug names, a one-page leaflet and that was that. I needed more, but I didn’t really get it, so in the end I just chose one.”
This year, we have been talking to groups of patients and asking them about how their information needs could be better met by health services. They have told us:
A patient said: I’m of working age, but my condition usually affects people who are much, much older. The information I’ve been given has been totally useless to me.
“I need to know about the impact on my ability to work and bring up my family, but I haven’t ever really been provided with that and it’s been left to me to find out.”
Importantly, for information to provide people with the support they need, it must be good quality. This means that health information is:
PIF has a toolkit outlining the principles for creating good quality health information, and key steps for how these principles can be implemented.
In May 2017 we published a summary report on the findings from our research into how health services can improve the way they provide information to their patients and services users.
What are your experiences of health information? How would you make things better? Or are there great examples of health information you can share for others to learn from?
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