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Making health information work better for all of us

Claire Murray

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:

  1. Information on first diagnosis is essential.
  2. Information on first diagnosis can also be overwhelming.
  3. Information needs change as people move along a care pathway or live longer with a condition.
  4. Every patient experience is different, but there are certain points where information is essential, for example when a decision needs to be made, or when there is a change or deterioration in the person’s condition or circumstances.
  5. It’s obvious, but information must be tailored to the needs of the individual.
  6. Being supported to ask questions is vital.
  7. ‘Dr Google’ can be a problem, but patients generally know how to filter online information.

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:

  • Accurate and reliable
  • Clearly communicated and accessible
  • Relevant and tailored to an individual’s needs
  • And – above all – developed in partnership with patients and service users.

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.

You’ll find details on Health Information Week using the link and, if you’d like to know more about PIF’s work please visit our website or sign up to our mailing list.

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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John D. Norris 30-Jun-2017 at 21:09 hrs

From an old persons point of view would it be possible for Carers and those who are having treatment without a carer to be well informed as to the consequences of leaving hospital and being put into a Nursing home. the fnancial costs can be worrying