A six-point plan to help organisations adopt the Patient and Family Centred Care methodology – which focuses on shadowing patients through a care experience – is now available online, write Lisa Byrne and Beverley Fitzsimons

Listen, understand, act

Listen, understand, act

Listen, understand, act

The King’s Fund and the Health Foundation have launched a toolkit of resources based on the patient and family centred care methodology, which includes a step by step guide to implementing this simple, clinically led approach to service improvement.

It is widely accepted that patient centred healthcare delivers a better patient experience and high quality care.

There is also increasing recognition that the best chance of successful innovation and improvement in the NHS comes from investment in staff and support for them to develop vital improvement skills.

‘It is a practical way to get to the heart of what really matters to patients’

As done with the experience based co-design toolkit, the patient and family centred care methodology is a practical way to get to the heart of what really matters to patients and help staff to understand what the experience of care is like for patients.

The main technique involves shadowing patients through their chosen care experience - an exercise that has been transformational for the staff involved.

Patient centred service improvement approaches have been met with mixed results in the NHS, but this clinically led, low technology approach brings together the key features shown to be most effective in the improvement literature. Namely: staff engagement; teaching and support for improvement skills, particularly measurement; and connecting with staff’s intrinsic motivation to provide high quality care and continually improve.

Insights from science

The method was developed by Tony DiGioia, an orthopaedic surgeon with an engineering background in Pittsburgh, America, who brought insights from design sciences into the work of quality improvement. 

Applied by clinical teams with support and sponsorship from an executive team member, the method has six simple steps with the overall aim of viewing all care through patients’ eyes (see box below).

To date, 16 NHS organisations have worked with the King’s Fund and the Health Foundation to develop the six point plan, which has now culminated in an online guide and toolkit for clinical teams who want to adopt this approach in their organisations.

‘Shadowing connects practitioners deeply with their patients’ experiences and helps them to reconnect with their motivation’

Our work has found that practitioners find the shadowing exercise particularly powerful and often surprising.

Shadowing connects them deeply with their patients’ experiences and helps them to reconnect with their motivation for working in healthcare.

It also helps to identify where improvements to delivering high quality care are possible.

For example, it has led to improvements in the consistency of clinical care for children with acute asthma; in the experience of care for patients with dementia and their families helping them understand and navigate the care process; and in the organisation of care for children undergoing assessment for Duchenne muscular dystrophy.

The six steps to patient and family centred care

  1. Identify a care experience from the patient’s perspective.
  2. Establish a low bureaucracy infrastructure - a “guiding council” - to steer the improvement work.
  3. Evaluate the current situation, principally through patient shadowing.
  4. Develop a “working group” – clinically led teams who lead and deliver the work.
  5. Create a shared vision of the ideal care experience.
  6. Identify sub-projects and begin the improvement work.

Identifying areas for improvement

In September 2012, as part of the programme, the neuromuscular team at Great Ormond Street Hospital set out to improve the care experience of boys attending a Duchenne muscular dystrophy clinic.

Consultant paediatric neurologist Adnan Manzur and neuromuscular nurse specialist Ruth Barratt led the project, with support from improvement manager Lisa Byrne.

The severe condition affects boys and results in progressive muscle weakness. Clinics are complex and require a multidisciplinary team to monitor and manage patients’ care, including physiotherapists, dieticians, clinical nurse specialists, family care advisers, consultants and lung physiologists.

‘The team worked with staff, patients, parents and advocacy groups and identified areas for improvement’

Using a combination of the methodology and the Associates in Process Improvement’s model for improvement, the team worked closely with all staff involved in the pathway, as well as patients, parents and advocacy groups through formal debrief sessions and focus groups.

Parent and staff questionnaires, parent interviews and patient shadowing identified several areas for improvement.

These primarily fell into three areas: communication, environment and coordination. Problems identified in these areas were all contributing to increased stress on families, patients and staff.

Over one year

The team tested numerous ideas, using “plan, do, study, act” cycles and collecting both quantitative and qualitative data. As a result they have succeeded in embedding sustainable interventions to improve the experience of families, including:

  • a new clinic appointments schedule that reflected realistic time needed for assessments;
  • clinic preparation packs for consultations to ensure the medical team have full clinical history about patients;
  • volunteers to support the clinic to act as a link between the clinical team and the patient and their family - for example, helping families navigate the hospital to get to other appointments on time and providing play activities for the children;
  • a single page appointment letter to consolidate all appointments into one document;
  • new privacy screens in the gym to improve the environment;
  • an updated hard copy plan for patients on arrival at the clinic containing team contact details and records of appointment details; and
  • a text alert system to remind families about appointments to reduce non-attendance.

Patients waiting less than 30 minutes for an appointment increased from 58 to 92 per cent and families who reported receiving a care plan on arrival increased from 25 to 91 per cent.


Between January and May this year, 71 per cent of muscular dystrophy patients’ physiotherapy appointments started on time or within 10 minutes of the appointed time, and 66 per cent of consultant appointments started within the same timeframe.

Families reported that appointment letters and reports are now much clearer.

‘It was powerful to see care through their patients’ eyes’

The team developed a key contacts sheet responding to families reporting that they were unsure of who to contact outside clinic hours. A family information and communication pack - developed in collaboration with families - is also being finalised.

It was powerful to see care through patients’ eyes: hearing about their long and painful journeys to the hospital; getting lost; how taking blood can make the boys and mothers cry; and how clinic scheduling or delays can mean families miss meals.

Now the team is much more aware of these experiences it can turn its attention to what can be done to ameliorate them.

A powerful toolkit

The toolkit offers a guide to the key steps plus additional resources on the improvement methods that teams found particularly useful in delivering their patient and family centred care projects.

These included how to devise a driver diagram to help focus the work on what really matters, and some important techniques around measurement for improvement, which requires a different approach to measurement than many used in the NHS.

‘Shadowing has proved to be an important and powerful tool in supporting the aims’

The toolkit includes short films with teams who have carried out the approach, talking about how they did it and what it meant to them. There is also a LinkedIn group to connect people who use the approach to share their learning.

The important thing is that it incorporates the key features of the most effective improvement initiatives.

Namely it invests in frontline staff to develop their skills and appeals to their intrinsic motivation to deliver improvement and high quality care.

Shadowing has proved to be a particularly important and powerful tool in supporting these aims.

Lisa Byrne is improvement manager of transformation at Great Ormond Street Hospital for Children Foundation Trust, and Beverley Fitzsimons is programme lead of the patient and family centred care programme at the King’s Fund