• 26 Jun

    7 steps to the ‘Perfect Patient Information Journey’

    Sue Farrington Posted by
    Sue Farrington

    Many thanks to Sue Farrington, Chair of Patient Information Forum (PIF), for this blog.  You can also listen to a podcast with Sue here on the importance of health information:

    We’re hoping that 7 is the magic number to achieve nirvana for healthcare information and finally ensure it becomes embedded into the patient pathway.

    Working with patients and clinicians, supported by AbbVie, the Patient Information Forum has developed a 7-step process to support healthcare services to develop and embed patient information across their pathways. By using this process, services can create a ‘Perfect Patient Information Journey’ and transform the information experience of patients in a matter of months.

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    Why healthcare information?

    There’s already overwhelming evidence that health information, when it’s reliable, clear and provided at the right time and right place for the individual, is hugely beneficial.  And what’s more, a person’s right to information to inform their care is enshrined in the NHS Constitution.

    But patients still report they’re not receiving the information and support they need to make informed decisions about their health and wellbeing. In a survey of 1,500 people with long-term conditions, 36% said they didn’t have enough information when first diagnosed and this figure rose to 58% for 18-24 year olds.

    Patients’ responsibilities & rights

    As the NHS creaks under pressure, there is a renewed push for people to take greater responsibility for elements of their own care. But if we’re going to take responsibility for our health, then it’s essential our rights as patients are met. Putting patients in control through access to information and support will enable patients to take greater responsibility.

    What needs to change?

    The good news is that high-quality information, and the tools and resources to support shared decision-making and self-management already exist. The problem is they’re not being made widely available and so to address this issue, the Patient Information Forum worked with patients and clinicians to identify and create a pathway that embeds the provision of accessible and tailored health information into the provision of care, from diagnosis, through treatment, to longer term management.

    The Perfect Patient Information Journey

    By putting patient information needs at the forefront of service planning and by thinking about the ‘Perfect Patient Information Journey’ for patients, healthcare professionals can ensure that individual patients receive the right information, in the right format, at the right time.

    The two key things we know are needed are time and leadership. Time to listen to patients about what they need, to map the pathway, identify and plug any gaps. Leadership to make sure everyone in a service knows their role regarding patient information, to make sure it is a priority and ensure it happens.

    We would like to see every healthcare service adopt our ‘Perfect Patient Information Journey’ and use the 7 steps to embed and signpost high-quality, easy to understand and simple to access information for patients when they need it. This report is a first step towards that goal.

    Perfect Patient Information Journey: 7 steps for health services to improve information for people with long term conditions.

    Call for action

    In failing to provide patients with all the information and support they need to participate in decisions about their healthcare, the health service is currently compromising all three key dimensions of quality care – patient experience, patient safety and clinical effectiveness.

    If patients are to take greater responsibility, we need to respect their rights and enable them to participate.

    So, to the Government and others who are calling for patients to take greater responsibility for their health, we would challenge them to step up and meet their responsibilities to ensure that patient rights to information are met and delivered.

    You can read the full report here: https://www.pifonline.org.uk/wp-content/uploads/2014/11/PIF-PPI-Journey-Final-25Jun18-1-website-version.pdf 


    Posted on Tuesday, 26th June 2018