How are we involving patients in our work?

We are a membership organisation and we work closely with our members to define what needs to go into a standard and then this is tested in a variety of ways, including workshops that involve patients and carers.

Listening to patients and encouraging their stories

Our ambition for the future is to encourage patients to tell their stories about how good information sharing when they move from one care setting to another has impacted upon the care they have received and how this has supported them in helping shape decisions about their care. We will use a variety of media including case studies and videos to share these experiences.

We will use these stories to help encourage and influence health and social care to adopt best practice in record keeping and to find innovative ways to ensure that patients and their families also receive the right information at the right time.

What are the benefits for patients, carers and the public?

Getting the right information to the right people benefits patients in a number of ways, including:

  • Key information is shared with all those the patient comes into contact with, meaning patients do not need to keep repeating the same information time and time again
  • Errors in medication are reduced
  • Transfers of care, from one part of the service to another, are efficient and timely, reducing delays
  • Health and social care can be targeted to support people in the most need
  • Patients receive information, for example on discharge, and understand what has happened to them and what will happen next – this supports shared decision making about future care and there is some evidence that suggest patients stick to their medication regime when they understand what it is for.
Would you like to get involved?

If you would like to get involved or find out more then please contact us

Sabine's story

Sabine is a parent carer who is working with us to implement the child health digital strategy.  Her son has additional needs and he sees a number of specialists in different care settings. Sabine is responsible for co-ordinating all the information between care professionals which she finds a constant challenge. Find out more

Our partners: National Voices

National Voices is a coalition of charities that stands for people being in control of their health and care. Their mission is to make sure that people having as much control and influence as possible over decisions that affect their own health and care.

We are discussing how our work complements theirs, how we can capitalise on the wide range of charities that form the membership of National Voices and investigate possible partnerships for future campaigns around sharing health and social care records across the system.