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Patients as teachers: the patient's role in improving cancer services

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Health-care professionals are increasingly recognising that they can learn from patients and gain insights to influence their practice (Wykurz and Kelly, 2002). As patients become better informed about their health and as their expertise is harnessed to teach other patients in primary and secondary care, they in turn expect to make decisions with health-care professionals rather than having choices made for them.

Noreen Cushen, BSc (Hons), MSc, RGN, Dip Onc, Dip Research

Nurse Consultant, Oncology

 

NHS policy emphasises the need for good communication between health professionals and patients, both for delivering high-quality care and for empowering people to become involved in decisions about their own care (DoH, 2000a).

There is widespread agreement that people should be informed about health-care options. The NHS Plan, The NHS Cancer Plan and the Expert Patient programme (DoH, 2000a; 2000b; 2001) emphasise the need for patients to have more influence on the way the NHS works.

Patient involvement has a number of potential benefits. It can help to develop services appropriately and improve quality, enabling staff to provide better care and thus improve patient outcomes. Several documented initiatives involving patients have led to the promotion of more positive experiences for patients (Butterworth and Livingstone, 1999) and better clinical outcomes (Holman and Lorig, 2000). Bringing together staff and service users can also foster dialogue on service issues, promote mutual trust and enhance relationships.

In 1999, the Princess Alexandra Hospital NHS Trust and the Office for Public Management obtained the views of cardiac patients with the aim of improving quality of care and developing clinical governance arrangements. This model was then adapted for users of cancer services. Patients were asked to educate health professionals by highlighting what was good and bad about their treatment, and identifying problems and possible solutions.

How to involve patients and the public

Patients have been involved in educating health professionals on a range of issues for several years, particularly in the USA and New Zealand (Wykurz and Kelly, 2002). Most of these have involved patients assessing medical students’ and doctors’ communication and physical examination skills.

Involving patients and the public in service planning may enable people to become involved in decisions concerning changes in services, reconfiguration issues, allocation of resources and rationing. In the area of improving quality, patients and carers may provide feedback about the problems they have faced and offer possible solutions. There are three levels of patient involvement:

  • Patients and the public may simply be told or informed about issues (top-down approach)
  • Patients may be asked for feedback on specific issues (through surveys or focus groups)
  • Patients may be consulted on specific issues (patients-as-teachers initiative).

The selection of patients and members of the public for involvement in educational initiatives can be from among members of the general public, people with local knowledge and expertise (for example community interest groups, organisations representing others), and/or people who have direct experiences of services (such as users and carers). Each group brings a unique and distinctive voice to the initiative.

At the Princess Alexandra Hospital NHS Trust we believed that the most appropriate model for our purposes was to use patients as teachers.

Patient and public involvement

The patient and public involvement agenda was developed in response to section 10 of The NHS Plan (DoH, 2000a). Its aims are to provide patients and the public with more information and greater choice, run patients’ forums and public panels and to introduce greater regulation of professional standards. A statement from the health secretary (DoH, 2003) also made it a statutory duty of all trusts to consult and involve patients and the public in all aspects of the services they provide.

The Department of Health set up the Commission for Patient and Public Involvement for Health in January last year. The commission has appointed patient and public involvement forums (PPIF) to oversee patient advice and liaison services (PALS) and to commission the Independent Complaints Advocacy Service. The forums began operation last December when the community health councils ceased to exist. All primary care trusts (PCTs) now have a PPIF. Hospitals that gain foundation status under the government’s new proposals, however, will not be required to have a PPIF.

Every local authority will have an overview and scrutiny committee (OSC) that will be consulted on any proposed major changes to be made to NHS services locally; any changes contested by an OSC will be referred to the health secretary. Where appropriate, the committees will form a partnership to address common issues of concern, such as delayed discharges.

All NHS trusts will also be required to belong to at least one local compact group by the end of March, which will be set up with the aim of involving the local council, local PCTs, social services and the voluntary sector. Eventually, each local group will agree a set of principles, to be signed by each member. This will be binding and incur penalties should a member fail to meet its commitment. In principle, this could be a way to include all patients. However, to ensure this, the groups will need to ensure that they engage people across all communities, including those from poorer socio-economic backgrounds and ethnic minorities.

All trusts have been asked to prepare a baseline assessment to confirm their existing user/support groups and identify areas where the patient and public involvement has been encouraged to provide comments about trust services. The project team for the implementation of the patients-as-teachers at the Princess Alexandra Hospital Trust provided the patient public involvement co-ordinator with all the relevant information for a baseline assessment.

The patients-as-teachers model

The patients-as-teachers model was used in conjunction with the Office for Public Management for Cardiology Patients (DoH, 1997) to integrate patients’ views and expertise in order to improve quality. For a summary of this process, see Walker and Gilbert (2001).

The process

Building on the results of the cardiology model, the patients-as-teachers initiative was applied to cancer services. In this instance, patients become educators of the professionals. This involves bringing together delegates from patient focus groups and professionals to discuss aspects of service quality. This was integral to the implementation of the Princess Alexander Hospital NHS Trust nursing strategy (2000-2003) and the Cancer Services Collaborative (CSC).

The project team included the oncology nurse consultant, the CSC project manager, the PALS co-ordinator, and clinical audit/governance facilitator, with support from the director of nursing and the chairman of the trust. Administrative support was provided by a project assistant. The project consisted of five phases.

Phase 1. Patient focus groups

Three focus group sessions were organised to explore the patient’s experience following a diagnosis of cancer. Flyers outlining the patients-as-teachers initiative were displayed throughout the trust. Patients who expressed an interest were sent an invitation to take part in one of the focus groups, as well as other information, including the Patient’s Issues booklet (NHS Modernisation Agency, 2001).

We invited 30 patients to take part; 25 of them attended a focus group. This included eight women and 17 men, with an age range of 38 to 76 years. The sample represented all tumour groups.

The format of the focus groups, as well as an overview of the patients-as-teachers model, was explained at each session. Following the formal overview patients were split into smaller groups, which were led by a member of the project team. Patients were asked to describe their experiences. This usually covered a range of issues concerned with the patient’s care pathway. Patients were asked to comment on their experience of the quality of service. Common themes were explored in more depth. Extensive notes were taken during this process using flipcharts.

Findings

Following an analysis of patient feedback, the issues raised were categorised under four headings. These are detailed later, but in summary included:

  • Communication. This was a theme that ran throughout the patient experience, whether in primary or secondary care, and included communication, information provision, attitudes and understanding, and issues relating to treating people equally and with respect and dignity, in particular with regard to breaking bad news
  • Access. This focused on the patient’s care pathway and covered access and continuity issues - such as waiting times, referrals and medical records - and back-up services - such as pharmacy provision
  • Care in hospital. Issues covered included how to make patients’ hospital stay more comfortable and less frightening, improve the atmosphere and environment in wards, the quality of care received and the competence of all health-care professionals involved in patient care
  • After-care. These issues included practical and emotional support, support for carers, information about lifestyle changes and cancer prevention, advice on welfare and benefits, retraining, rehabilitation and follow-up.

All information was anonymous so that patient confidentiality was assured.

Patient delegates

Participants in each group were asked whether they wanted to take part in Phase 3 of the work and meet professionals to represent the views of their group. Ten out of the 25 volunteered. Of these, five were selected to represent a ‘best fit’ of each group make-up by gender and age.

In preparation, the delegates were sent a summary of the group discussion to validate the findings. They were then invited to a meeting to discuss these themes, to prepare for the patient/ professional event and to identify priority topics that might be a foundation for further work. Delegates were asked to rank the themes that emerged in order of importance. First, they were asked what they considered most important in the provision of an ideal service and, second, what they ranked as a priority for improvement.

Phase 2. Involving professionals

Meanwhile, two events were held for professionals at the trust. The first was a presentation to senior managers and the second to health-care professionals. Twenty-five people attended, including the trust chairman and the medical and nursing directors. The aims of this event were to think through the reasons for involving patients, how it might help the trust, how to make use of the findings and to identify concerns about the process.

A further event was held for a specific group of managers and clinicians in order to report on the findings from the patient focus group, to prepare staff for the meeting with patients. During this meeting, participants were asked to identify potential solutions to the issues raised by patients.

Phase 3. Combined patient and professional group

The final process involved bringing patients and professionals together in a combined focus group to agree the proposed solutions and to develop an action plan. Each action was given a deadline and assigned to a member of the professional team to co-ordinate.

Phase 4. Implementation of the action plan

Following the combined focus group, the action plan was distributed for ratification to all staff nominated within it. It was also presented to the trust board and trust management team for validation to proceed.

From the four emerging themes, three project teams were identified, which covered all actions with their key personnel. These were:

  • Communication and continuity of care
  • Inpatient services
  • Education and training.

Each project team is led by the relevant senior professional, for example, the director of operations, the director of nursing and the consultant oncology nurse respectively. Each team’s remit is to ensure that the action plans agreed by the joint focus groups are implemented.

Phase 5. Review of action plan and outcomes

Regular feedback to the patients from the focus groups and the trust board will ensure that progress is monitored and communicated to all those involved in defining the action plan.

Quality review

The process

The aim of the patients-as-teachers model of care is to provide continuous improvement in quality of services. Therefore, we felt it was imperative to ensure that we had implemented the model in an effective way. We developed two simple questionnaires - one for patients, one for professionals - asking for feedback. Responses to date are positive and have shown that staff were empathetic and consistent. Patients stated that they felt as if they had really contributed to improving cancer services.

The local project was highlighted in the Commission for Health Improvement’s report (2002) for the Princess Alexandra Hospital NHS Trust as an area of good practice for user involvement.

The project

One of the patients involved in the focus groups expressed an interest in applying a quality assurance model to this project, which he had used previously in the private sector. We invited him to a team meeting, where he suggested that one area where these initiatives fell down was in their failure to revisit the original problem and assess whether it had been solved or progress made on the issue (root-cause analysis). As a result, the team has agreed to revisit each of the specific areas in the action plan annually to ensure progress has been made or a solution reached.

Discussion

Our experience has shown that this model, if implemented effectively, can be invaluable for discovering issues that are important to patients directly from patients, including those from lower socio-economic groups and ethnic minorities. However, there are problems with monitoring the sustainability of the changes owing to a lack of dedicated resources.

It is vital that the project team members are motivated and have full support from their trust executive team. In addition, it is crucial that the project team has an understanding of, and respect for, the provisions of the 1998 Data Protection Act and the Caldicott principles (DoH, 1997) when recruiting patients.

Conclusion

As the NHS is reformed, the service provided must become more patient centred (DoH, 2000b). The implementation of the patients-as-teachers model within the Princess Alexandra Hospital NHS Trust has proved that the issues affecting patients are quite different from those that affect professionals. The use of this model has helped us to prioritise actions for service improvements and enabled us to ensure that these are patient-centred.

Acknowledgement

The author would like to thank the patients and staff who participated in this project, especially Robert Powell, trust Chairman; Mona Walker, Lead Nurse for Bedford and Hertfordshire Strategic Health Authority; Yvonne Blucher, trust Director of Nursing; and Jo Hodson, General Manager for Cancer Services.

Useful information

Department of Health. (2003)Involving Patients and the Public in Health. At: www.doh.gov.uk/ involvingpatients/index.htm.

 

 

Butterworth, M., Livingstone, G. (1999)Medical student education: the role of care givers and families. Psychiatric Bulletin 23: 549-550.

Commission for Health Improvement. (2002)Report of a Clinical Governance Review at The Princess Alexandra NHS Hospital Trust. London: The Stationery Office. At: www.chi.nhs.uk/ eng/organisations/eastern/pr_alexandra/2002/pr_alexandra.pdf

Department of Health. (1997)The Caldicott Committee. Report on the Review of Patient-Identifiable Information. London: DoH. Available at: www.doh.gov.uk/ipu/confiden/report/

Department of Health. (2000a)The NHS Plan: A plan for investment, a plan for reform. London: DoH.

Department of Health. (2000b)The NHS Cancer Plan: A plan for investment, a plan for reform. London: DoH.

Department of Health. (2001)The Expert Patient: A new approach to chronic disease management for the 21st century. London: DoH.

Department of Health. (2003)The Arrangements of the Next Phase of Implementation of the New System of Patient and Public Involvement of the NHS. London: DoH.

Holman, H., Lorig, K. (2000)Patients as partners in managing chronic disease. British Medical Journal 320: 526-527.

NHS Modernisation Agency. (2001)Cancer Services Collaborative: Patients’ issues. London: DoH.

NHS Modernisation Agency. (2003)Essence of Care: Patient-focus benchmarks for clinical governance. London: DoH.

Walker, M., Gilbert, D. (2001)Creating a climate of trust. Nursing Times 97: 45, 33-34.

Wykurz, G., Kelly, D. (2002)Developing the role of patients as teachers: literature review. British Medical Journal 325: 818-821.

 

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