The Values Based Standard™ of Macmillan Cancer Support: A quality framework for improving both patient and staff experience through co-production

The Macmillan Values based Standard™ aims to achieve a transformation in patients’ and families experience of care, through patients and staff co-designing solutions and interventions that change behaviour.  The standard provides a framework and methodology for improving both patient and staff experience through co-production.    

Research indicates that patient experience varies.  Some groups have a poorer cancer experience, for example, those who are old or whose sexuality is other than heterosexual.  But rather than thinking about how to make improvements for specific groups – which in any case overlap – the standard suggests that ‘difference’ is the norm and that care must respond to the needs of each individual patient. 

The initiative was launched because despite more than a decade of patient satisfaction surveys in provider organisations, limited progress has been made in actual improvement. One reason for this may be that work on patient experience has primarily focused on finding out what patients and relatives think about their care. Whilst these mechanisms are useful, in themselves they do not lead to improvement.  They merely tell us the current state of play much of which we already know or could predict. 

In addition, many surveys concentrate on satisfaction rather than experience and the two are not the same.  Research is beginning to indicate that the relational aspects of care may be what patients value the most.  Findings indicate that ‘the quality of technical care is often taken for granted, while patients and relatives comment more often on aspects of experiences and care mediated through interpersonal relationships between staff, patients and relatives’ (Bridges et al. 2010).

In other words the relational aspects of care ‘trump’ the transactional aspects, eg. waiting and décor. The Macmillan Values Based Standard™ sets out eight behavior domains that staff and patients feel underpin the ‘relational’ aspects of care between the patient and the person/people caring for them. 

Work with regulators; professional organisations; higher education

Following the co-design stage of the framework, extensive work was undertaken with national organisations with a remit for quality and patients’ experience.  Macmillan Cancer Support worked closely with the Care Quality Commission, to support its inspectors to consider what dignity and respect looks like in practice and to influence them in considering how the relational aspects of care are assessed within the current regulatory framework. 

Work with commissioners concentrated on considering how the standards could be incorporated into commissioning frameworks such as CQUIN (the additional quality payments available for demonstrating quality improvement).  Importantly, these discussions also focused on how reference to the Macmillan Values Based Standard™ could change and influence the nature of the conversation between commissioners and providers.

Professional organisations such as The Royal College of Nursing (RCN) were also an important audience to engage.  Discussions focused on how the Macmillan Framework aligned with current RCN policy and guidance for their members.  In addition work is underway with higher education providers who develop and run undergraduate training for nurses and other healthcare providers.  The aim here is to embed the framework into the curriculum in order to influence the next generation of healthcare practitioners and clinicians.

Testing the implementation of the framework in a range of organisations

Once the framework was developed the third phase of the work was to ‘test’ the implementation of the standards in a range of healthcare provider organisations.  This is in order to answer the question ‘what difference do the standards make to patient and staff experience?’

Phase 1 test sites are set out in Box B.  A decision was made to work in two health economies:

• London, because the National Cancer Survey indicates that cancer patients in London report a significantly poorer experience of care than in other part of the country.
• Birmingham, where a Commissioner and a Hospice had shown interest in testing the framework. 

Phase 1. Test sites

• Kings College Hospital Foundation Trust
• University College London Hospital Foundation Trust
• Imperial College Healthcare NHS Trust
• John Taylor Hospice
• Birmingham South Central CCG

All organisations opting to test the framework agree to co-design being central to the approach and to joining a collaborative through which they periodically share their learning and their progress.

Methodology of the Values-Based Standard

‘Sign up’ to test the framework was initiated through a senior person within the organisation, either CEO or Medical/Nursing Director.  The next part of the process was to identify an operational lead within the organisation with whom Macmillan could work on an on-going basis.  This person was instrumental in identifying the initial ‘test’ areas within the organisation.  Every test site was encouraged to adopt the same three-stage methodology, summarised below.

1. Discover: What is really going on here?

• Use survey data, annual and real time
• Work with staff – identify system failures Interview patients
• Observation

2. Innovate: What interventions might help?

• Staff and patients co-design interventions
• Agree measurement systems •Small tests of change
• Evaluate and refine

3. Improve: Measure, sustain and spread improvement

• Develop measurement systems that ensure on-going improvement
• Continually involve patients and staff in understanding ‘how we are doing’
• Develop a plan for spreading good practice
• Feedback results to front line staff and through corporate structures e.g. Board

1. Discover

The discovery phase of the work has been an important process, helping those involved really understand what patients and staff say and feel about their experience of either receiving or giving care.  Understanding experience from different perspectives can provide a powerful case for change.  

Staff and patients from one ward talking independently about ward rounds.

“We don’t always know when the doctor is doing the rounds….so I don’t know what the patient has been told.  This means I am cautious about what I say.”  Nurse in a staff workshop

“Sometimes on the ward I turn up to do my round and I just can’t find a nurse to come with me” Doctor at a ‘Grand Round’ discussion on the Values Based Standard.

“It often seems like the nurses and doctors don’t talk to each other, they don’t seem to know what each other have said or are planning” Patient interviewed on a ward

This work has been developmental for the staff involved.  In addition to learning new skills e.g. interviewing patients, staff are incorporating what they are learning into every-day practices such as hand-over.  For example reminding all staff ‘today we are focusing on responding to call bells’.   This relates directly to the standard ‘Acknowledge me if I am in need of urgent support’. 

At one site staff members have learnt how to interview and film patients. The patient story, captured through video, is then shown in staff development sessions. One theme, from these patients was their feelings of isolation whilst in hospital and their observation about how busy the staff seemed to be. One health care assistant, after one such session, said she had reflected on the film once back on the ward and had used the last hour of her shift to go and sit with each patient just to talk to them.

Measurement is an important aspect of phase 1 of the process as it provides the base-line from which staff are able to judge whether a change has led to real improvement in patient and staff experience.

2. Innovate

Whilst there are some improvements that can be acted upon by individuals immediately, others, such as the way the ward rounds are planned, need a multi-disciplinary approach, including the input of patients. This takes place in the second phase of the methodology: innovation.  This phase usually starts with a ‘way forward event’ involving a multi-disciplinary group of staff.  Prior to the event all data collected is analysed and themed in a process of triangulation to ensure that the feedback is robust.  Results are then presented to those attending the event and they then work in groups on each of the key areas arising.  

3. Improve

Following the ‘way forward event’ front-line staff members volunteer to lead the identified work areas.  The box below provides an example of six key work areas (all relate to various domains in the standard) identified through one ‘way forward’ event.  These five work areas were prioritised from more than 30 ideas generated

Example of key improvements resulting from ‘way forward’ event

1. Improving ward lay out, chair placements, use of curtains etc for increased privacy and dignity
2. Wider participation in MDT - looking at best practice in the hospital and thinking about how this can be replicated.
3. Patient induction to the ward by other patients/ buddy systems
4. Visual prompts to encourage feedback and alert people to an open culture where feedback is sought and welcomed.
5. Systematic ways of inviting feedback from relatives and friends (including text), and documented dialogue with patients and relatives.
6. More patient/family involvement in MDT rounds

Work then begins with staff and patients co-designing interventions. In practice this means a systematic improvement approach, using specific techniques including:

• The co-design and testing of interventions such as those outlined in Box C that can be measured in terms of compliance and impact
• Plan, Do, Study, Act methodology which includes rapid tests of change
• Measurement systems that engage and provide ‘real-time’ feedback to those participating

In addition, to enable the vocational and reflective learning element of this work one site has released staff to attend a learning set throughout the duration of the initial interventions stage.

As well as testing interventions in terms of their impact on patient and staff experience, other steps include embedding the framework into organisational systems and processes, for example rewriting job descriptions and interview/assessment processes to reflect the values and including the framework in induction processes and appraisals.

The third stepping stone will be to sustain the improvements made and spread good practice within and beyond the organisation.

Improvement work has been described as a marathon rather than a sprint.  It takes time to change the culture or an organisation.  The outcomes to date from the test sites include:

• Real time monitoring results of patient experience – there has been a pronounced shift from red to green  on four wards implementing the Values Based Standard™ in one hospital
• Bespoke cancer survey results – quarterly monitoring is showing that in the areas covered by the Values Based Standard™, improvement is being made in two of the three hospital sites (data is not available for the third site).
• Organic spread – other parts of the organisation are asking for the standard and for the tools we are using for implementation.
• Staff have demonstrated enthusiasm for innovation and improvement and are adopting small tests of change
• There has been a willingness by patients and volunteers to participate in co-design, examples include volunteers taking part in observation exercises and patients interviewing other patients, patients participating on the steering group for this work
• Leadership support has been demonstrated with staff being given headroom to participate in this work, for example a ward manager being given one day a week to lead this work in the first three months

Macmillan Cancer Support has invested in both the co-production of the Values Based Standard™ and the testing within provider organisations.  The emphasis in this work is on improving both patient and staff experience, and ensuring that behaviours by care-givers respond to people’s individual needs.  Whilst there is some evidence that improved patient experience can lead to reduced costs, that has not been the focus for this work and it is too early to speculate as to whether this might be the case.

A small amount of example is worth more than a mass of advice, collect stories to win hearts and minds, rather than ‘telling’ people what they should be doing.

1. Use data and ensure you have a robust base-line to work from.  This will be important in demonstrating an improvement has been made.
2. Collect experiences from both patients and staff – this will help provide evidence on where effort should be concentrated
3. In the initial stages ensure front-line staff have the ‘headroom’ and support this will enable them to lead the work
4. Quick wins are important, they do not need a project behind them
5. Ensure leaders are able to make strategic links, i.e. they are able to articulate how implementing the Values Based Standard™ supports and is integral to the organisation’s existing priorities
6. One solution/intervention does not fill all, this methodological approach is a strategy for achieving behavioural change in the eight domain areas set out in the Values Based Standard™
7. Concentration on action not action plans!

A final learning point.  If the interactions between staff and patients are at the heart of providing a good experience for patients and staff, it makes perfect sense that it should be patients and staff who focus on what needs to change to drive improvement.  Experience-based co-design is a vehicle through which the Values Based Standard can move from being paper-based to action oriented. 

Co-production, that is patients and staff working together is vital, because, as humans we don’t’ always do what we think we do, and we don’t always do what we say we do.    In our early work with a very good chemotherapy unit, staff reported that they knew and used every single one of their patients’ names.  The first patient we interviewed remarked ‘this is the first time in my life anyone has ever called me Shirley!  I’ve always been known by my nickname’. 

Macmillan Cancer Support
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Bridges, J., Flatley, M., Meyer J., Older people’s and relatives’ experiences in acute care. settings: Systematic review and synthesis of qualitative studies. International Journal of Nursing Studies 47 (2010) 89–107.