A patient voice: Digital transformation must start with us

I have a long history of mental health issues and accepting that these are not going to go away is the reason I’m self-employed.

I firmly believe that no patient experiences health care in the way managers and clinicians expect them to when they planned the service. This goes for everything from new hospitals to changes in clinic times. The same principle applies to digital transformation, in whatever form it takes. Engaging members of the public in digital transformation will help ensure that the changes that are made bring real benefits not just to the health service also but to patients, carers, family members and communities.

This engagement takes time. It takes commitment to make changes. When people tell you that what you have planned may work well for you but as a patient or carer it does not meet your needs, you must be open to hearing it. Engagement is much more than letting members of the public tell you that you have had a great idea - it is actively seeking the great ideas of all of those who use your services and creating change together.

Public and patient engagement brings you the knowledge, skills, and experience of those who are experts in their condition as well as their wider knowledge. Since I started working and volunteering in this area, I have had the pleasure of working with people who are living with sight loss, who, like me, have mental conditions or who care for family members who do. I have worked with those who have experienced cancer and multiple sclerosis and those who have caring responsibilities for both elderly parents and children. I have met people managing long-distance care and those like me who struggle to leave the house on their own. Most of us are excited by the possibilities digital transformation brings but we need to be part of the journey and not a box ticked off at the end of the work when changes can’t be made.

So, come to us, come to us early, and listen. We want digital transformation to work for as many people as possible, and if we tell you that in some cases digital transformation is not the right way forward, listen to why.