Since the Patients Association was founded in 1963, it has become widely accepted that patients should be actively involved in decisions about their care and in shaping the health services they use.

In the 1960s, the idea patients might have a role in deciding their care or designing services was radical – now it is mainstream. More than a decade ago, the NHS Constitution recognised the role patients have to play in their own healthcare. 

However, it has been a much greater challenge putting the idea of patients as partners into practice.

Elevate patients’ voices

So I welcome the World Health Organization’s focus on engaging patients to improve safety, this World Patient Safety Day, with its slogan “Elevate the voice of patients!”.

The Patients Association has been elevating patients’ voices and concerns for the last 60 years. Especially the idea that patients should be actively engaged in decisions about the healthcare they receive.

Our current strategic focus is to embed patient partnership in healthcare systems. Patient partnership is considered the most meaningful form of patient engagement as it gives patients decision-making power. We also believe patient partnership, and patient engagement more generally, improves safety; health systems that work with patients will value their input and be responsive to concerns about safety problems patients raise.

Principles of partnership

We have identified the six key principles of patient partnership, developing them with patients, a network of national and local organisations, and health and care thought leaders. The principles are:

1. Treating patients as equals: Patients are treated as equals, with their views recognised as equally valid and having an equal say in decisions.
2. Patients who are fully informed: Services and systems make sure patients are fully informed, in a way that patients can access and understand, and patients use as much information as they wish to.
3. Shared decision making and patient partnership: Shared decision making, and patient partnership approaches are used as a matter of routine.
4. Recognising inequalities: Inequalities are recognised, and appropriate approaches adopted for different patient groups and communities, identifying and meeting their specific needs.
5. Seeking patient input: Patient input is actively sought, genuinely valued, and meaningfully acted on.
6. Joining services around patients: Services join up around patients, working with them to identify their needs, and responding to them in a way that make things as easy as possible for the patient.

We believe there is a need for fresh impetus at a national level to help deliver principles behind patient partnerships and shared decision making that have been in place in various forms of guidance and strategies that underpin the NHS for more than a decade.

The Patients Association is working towards developing this over the period of our strategy with a campaign at a national level – in conjunction with patients and other partners – to realise the necessary changes in medical training, culture, leadership and patient power.

Join us for Patient Partnership Week next week. It’s our annual celebration of the best of patient partnership, patient engagement, shared decision making and personalised care.

 Ann Lloyd Keen, Chair of the Board of Trustees, the Patients Association