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3.3 Patient perspectives
It is often those closest to the process that are best placed to give useful feedback on the way
services work and how they can be improved. As patients experience the procedure or service
first hand, they have a unique and highly relevant perspective.
Patients’ input into designing services can be invaluable as they have an experience that staff
can’t access. Also, seeing services from a patient’s point of view opens up real opportunities
for improvement that may not have been considered before.
When to use it
It is important to gain the patient perspective any time you want to improve a service or
process. It is only at the level of each patient experience that the true quality of care can
be measured.
You should aim to gain the patient perspective when redesigning services, both before and
after care has been received to check the improvement ideas have worked.
How to use it
If you want to get a true picture of the patient perspective, you need to decide upon clear
objectives for what you are trying to achieve. Plan what you are going to do and decide on
the scope of the project. Don’t ask for input if you have no intention of making changes tokenism is easy to spot and offensive to many.
There are six main approaches to help you gain patient perspective.
1. Patient journey walk-through
2. Shadowing a patient
3. Experience based design (ebd)
4. Patient questionnaires
5. Focus groups
6. Semi-structured patient interviews
Patient journey walk through
A patient journey walk through is undertaken by a member of staff to understand a process
from the patient’s perspective. It may not reveal as much information as patient shadowing
because the real and felt emotions and perceptions of the patient are not available.
However, it is especially useful for gaining insight into the overall process and is much quicker
and easier to organise than patient shadowing.
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For maximum benefit, the person conducting the walk through should try to mentally put themselves
in the patient’s shoes. Try not to conduct the walk-through at maximum speed – observe everything
you can and ask yourself:
• If there is a waiting area, what does it feel like to actually sit in the chairs?
• If leaflets or posters are available for patient information – read them. Are they clear and are the
messages in different areas consistent?
• Where are patients sent?
• How far do they walk?
• What questions are they asked?
• How long do they wait?
• What do they see, hear, touch and feel?
As you do the walk-through, look for waste steps (those things that do not add value to the
patient experience).
Shadowing a patient
This is when a member of staff or a volunteer accompanies a patient on their journey through
the health system. Ideally, the shadower will be unfamiliar with the process and should also be
comfortable asking ‘why?’ This is a similar approach to a tracer study.
Shadowing provides objective, observational feedback that needs to be balanced by other approaches,
for example by obtaining the views of the staff providing the service.
Using this technique allows you to record patient movement in time and space, as well as capturing
perceptions of the service. This enables you to build up a comprehensive picture of movement,
combined with a flow diagram of actions and a qualitative perception of the process.
While the patient is being shadowed, the shadower can use interview techniques and observation to
supplement the information provided by the patient.
You will need to:
• Establish what you are trying to achieve and how shadowing will help you achieve it
• Clarify why this process is appropriate and what aspect of the patient pathway you want to focus
on (e.g. tracking the admission process)
• Develop a template to capture key timings e.g. the time the patient arrived, the time first seen by a
clinician, the time referred for tests etc.
• Ensure the shadower fully understands and is comfortable with their role
• Ensure the patient fully understands and is comfortable with their role; get their informed consent
to participate
• Write an information sheet about the aims, what is involved and the expected outcomes of the
study, which can be given to the patient
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• Make it clear that the presence of the shadower will not influence the care the patient receives
• Observe how the patient is treated by members of staff
• Observe how easy/difficult it is for the patient to find their way around the hospital. What goes
smoothly for the patient? Are any tasks duplicated?
• Observe the environment
• Provide support for the patient and shadower; acknowledge their time and effort
• Feed back to the patient and the shadower on how their work has helped with service improvement
Experience based design (ebd)
Experienced based design (ebd) is an exciting new way of bringing patients and staff together to share
the role of improving care and redesigning services. It has been developed by the NHS Institute for
Innovation and Improvement as a way of helping frontline NHS teams make the improvements their
patients really want.
While leading global companies have used similar approaches for years, the experience based design
approach is very new for the NHS. Where it has been used in the health service, it is having amazing
results - delivering the sort of care pathways that leave patients feeling safer, happier and more valued
and making staff feel more positive, rewarded and empowered.
What is special about the ebd approach?
Using experience to design better healthcare is unique in the way that it focuses so strongly on
capturing and understanding patients’, carers’ and staff experiences of services, not just their views of
the process like the speed and efficiency at which they travel through the system.
Instead, this approach deliberately draws out the subjective, personal feelings a patient or carer
experiences at crucial points in the care pathway. It does this by:
• encouraging and supporting patients and carers to ‘tell their stories’
• using these stories to pinpoint those parts of the care pathway where the user’s experience is most
powerfully shaped (the ‘touch points’)
• working with patients, carers and frontline staff to redesign these experiences rather than just
systems and processes.
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Patient questionnaires
This is a straightforward way of getting information from large numbers of people. Easy to administer,
you can also use questionnaires to measure levels of satisfaction with a process or service.
Questionnaires are useful for measuring baseline information and evaluating change over time.
Creating a questionnaire
• Be clear about what you are trying to accomplish, what you want the information for and how you
will use the results.
• Involve patients and service users in designing questions.
• Structure questions carefully: consider the balance between multiple choice (yes/no or Likert 5 point
scale, 1. strongly agree through to 5. strongly disagree) and free text questions. Multiple choice
questions are quicker for the user to complete and for you to analyse. Free text questions often
provide more valuable data, but take longer to analyse.
• Keep it short: it should take no more than 10 minutes to complete.
• Always pilot the questionnaire: try using small tests of change (PDSA) to refine and improve questions.
• Decide whether the questionnaire will be anonymous.
• Think about how you will reach your target group. Leaving questionnaires in waiting rooms, day
rooms or handing them out at reception is a good way to reach patients and carers. Remember to
provide pens. If posting, include a freepost or SAE for returns.
• Snap shot audits are a good way to get a representative sample of views from patients using a
specific service. This is a short questionnaire given to every patient who attends a particular clinic
on a particular day, or over a particular week.
Focus groups
A focus group is an informal collection of people sharing common characteristics. They meet to discuss
and debate their experiences about a specific topic or problem, e.g. patients who have recently visited
the accident and emergency department.
Focus groups will usually consist of 6-12 people who meet on one occasion only. They are a useful way
of listening to a wide range of experiences of a single area.
Holding a focus group
• Establish how you will fund expenses before setting up the group.
• Clarify the purpose, objectives and timings of the group.
• Send an invitation letter explaining the process, what is expected of the patients and what the
expected outcomes are.
• The focus group should last between one and two hours.
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• Make sure the venue is accessible to all participants.
• Provide refreshments.
• Agree ground rules and an agenda for the group.
• Use prepared questions and themes relating to the topic for discussion.
• Have a good facilitator who will not seek to lead but has strategies to help the group if they get stuck.
• After the focus group feedback outcomes/progress to the group.
Semi-structured patient interviews
Semi-structured one-to-one interviews are used to collect qualitative data. They aim to understand the
respondent’s point of view, rather than make generalisations.
They enable you to delve more deeply and ask ‘why?’ This often yields more information and
emotional response than a questionnaire and generates improvement ideas that can be tested out in
practice. The patient also has the opportunity to ask for clarification. However, these interviews are
more time consuming to conduct and analyse.
Conducting an interview
• Gain each person’s consent; guarantee confidentiality and anonymity.
• Think about how you will gain perspectives from the diverse population who use services; you may
need an interpreter. Contact your Patient Advice and Liaison Team for help if necessary.
• Consider using an interviewer who is external to the topic being discussed e.g. from another
department or an external organisation.
• Explain the purpose of the interview.
• Use open ended questions. Some will be planned (‘Tell me about...’) and some will arise naturally
during the interview (‘You said a moment ago...’, ‘Can you tell me more...?).
• Clarify what is being said so there are no misunderstandings.
• Aim for a conversational feel: questions should be asked when it feels appropriate; they may be
planned or spontaneous. The wording of the questions may vary in different interviews.
• Keep the number of interviews manageable; many improvement ideas can come from just a
few interviews.
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Examples
1. Using patient questionnaires to prioritise areas for action
Poole Hospital NHS Trust compiled an action plan based on their outpatient survey responses. They
identified three main areas for action:
• communication with patients prior to their appointment
• information given to patients
• the quality of the appointment itself.
The action plan was distributed to all staff working within the outpatients department and also to
staff in areas such as x-ray, pathology and pharmacy who regularly interacted with patients attending
outpatient appointments.
The action plan formed part of the trust’s quarterly governance development plan report submitted to
their strategic health authority.
A follow-up study took place some months later. This consisted of interviews with individual patients
following their consultations and concentrated on clinics where there was evidence of long waits and
possible organisational difficulties.
The findings were, in the main, very positive and the attitude and professionalism of staff was praised.
Areas of concern mirrored those previously identified in the survey.
2. Using patient shadowing to identify where improvements are needed
As part of the redesign of a colposcopy service in the Home Counties, patient shadowing was used
to identify possible areas of improvement from the patients’ perspective. The aim was to collect
information about a number of factors including:
• actual time spent waiting or being seen
• the standard of verbal, printed and signposted information
• staff responses to questions and specific needs
• the ambience of each area visited.
During a three-week period, three surgeons each had clinics shadowed. The clinic nurse approached
patients, explained about shadowing and gave them the information sheet. The patients who agreed
to participate were told that they could ask the shadower to stop at any time.
The shadower waited with the patient, following them wherever they went and asked appropriate
questions. During the consultation or procedure, the shadower remained either in the waiting area,
or discreetly in the background, observing. After each activity, the shadower asked for the patient’s
reactions to what had happened. The patient was able to see what the shadower was writing if they
wanted. After the appointment, the shadower asked general questions: what could have been done
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better? What was particularly good? The patient also had the opportunity to add anything they chose.
After the patient left, the shadower added own comments in the box provided. Clinic staff comments
were also recorded.
Patients mentioned:
• The length of waiting time: in outpatients and for appointments.
• That a pessaries label was easily visible, causing patients to think it was part of their treatment.
• The need for a recovery area as patients did not always feel ready to drive home immediately
after treatment.
• That they wanted some way of obtaining refreshments without walking outside the building.
Staff highlighted:
• That conversations in side rooms could be heard in the treatment room.
• That the consultant had to wait while the patient was with the nurse before and after treatment.
As a result of the exercise, these changes were made:
• Music is now played in the waiting area and in the colposcopy room.
• The pessaries label has been removed.
• The appointment system has been redesigned to include pooled referrals and partial booking.
• The colposcopy unit has been soundproofed.
• A second nurse in the clinic means that the doctor is not kept waiting, so more patients are now seen.
What next?
Depending on what stage you have reached in the improvement project will determine what your next
steps are. However, whatever stage you are at, you must always feed back to the patients involved
how their information is being used. You should also combine your patient perspectives with any
quantitative data that you have collected to help shape changes to the service.
Tools that may be useful once you have collected patient perspectives include:
• Using an affinity diagram will enable you to theme and sort all the potential areas for improvement
that you have identified.
• PDSA cycles provide a framework for developing, testing and implementing changes that lead
to improvement.
• Project management can help you make larger, more formal changes.
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Additional resources
Books
NHS Institute for Innovation and Improvement, Improvement Leaders’ Guide: Involving Patients and
Carers, 2005
Websites
www.institute.nhs.uk/ebd - for more information on experience based design (ebd)
www.pickereurope.org - Picker Institute Europe – a series of improving patient experience factsheets,
designed to help healthcare organisations share approaches to improving patient care. Each issue
focuses on a specific theme and features examples of good practice.
www.sociology.org.uk – Sociology Central – a useful resource with more information on semistructured interviews.
Background
The involvement of patients, carers and the public in decision making is at the heart of the
modernisation of the NHS and is now a central theme of national and local policy.
The Kennedy Report on the Bristol Royal Infirmary Inquiry is acknowledged to have had a great impact
on the delivery of healthcare in the UK. Published in July 2001, the report recommended that ‘the
perspectives of patients and of the public must be heard and taken into account’.
Acknowledgements
Improvement Leaders’ Guide: Involving Patients and Carers, NHS Institute for Innovation and
Improvement
Robert James, Patient Consultant
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