Guidance for caregivers (8) The empowered patient

4 October, 2021

Primrose, [Primrose Magala, UK/Uganda ]

Marlene Winfield OBE was head of patient and public participation for the UK NHS Information Authority in the 2000's and was a member of the UK Royal College of Physicians' Records Standard Group. Marlene and I had 12 stabs at writing a new syllabus for cocreated records, so we called the syllabus "Syllabus 12". I have pasted the first piece of the coproduction using records syllabus but could share more.

"*A syllabus for medical students – patients accessing their records*



*Basic assumptions*

Each patient has a vision of what their life should be and they look to others to help them achieve the closest possible match, given various health and other issues. It is a paradigm shift.


Patients and their families and carers are the main resource for living with the consequences of their own diseases.


“Increasingly, it is patients who are instrumental in providing their own care”, and therefore one task of the clinician is to ensure patients are best equipped to do that efficiently and effectively.


The patient accessed record should, therefore, deal with how best to encourage and enable supported self-care, using the any tools available now and in the future. It should cover working with interactive care plans, information prescriptions, pre-consultation preparation for the patient.

The record should be described as something that is not shared so much as jointly held - a Wiki record where all those involved in achieving the patient's vision contribute to it.

*The partnership of trust*

Shared responsibilities and disciplines of health and disease management for patients and clinicians

An appropriate audit and review of implementation of care pathways through the health records

Conversations and agreements through the records

Discussions with patients about how their information is recorded and made available to others.

*The empowered patient*

“power sharing as a skill and a necessity”.

Do as much for themselves as they can

Be able and skilled to ask for help when they need it

To say no to care that they do not need