The policy of patient-centred care has become a mainstay of efforts to reform health care in the UK and improve standards (DoH, 1997; 1999; 2000; 2004a). Government policy is now built around this core concept, a major aspect of which is enabling patients to participate in decision-making about health care at every level of the NHS.
VOL: 101, ISSUE: 13, PAGE NO: 34
Bridget O’Hagan, MA, RGN, Dip health care research, is national project lead, Patients Accelerating Change Programme
Sarah Squire, PGDip health and professional education, BA, RGN, is director of patients’ experience, governance support team, and operational director of the expert patients programmeCaroline Powell, MSc (research), MSc (management), BSc, is deputy chief executive, Picker Institute, Europe
NHS organisations therefore now need to think creatively about how to recruit and involve patients in planning and delivering health care services. Organisations need to invest time and effort in this. They must treat patients with respect rather than tokenism if patient involvement is to be effective and true ‘partnership working’ is to be sustained.
Improving the experience of the individual patient is at the heart of The NHS Plan (2000), with the government focusing on the ability of the NHS to become truly responsive to the experiences of patients. Section 11 of the Health and Social Care Act (2001) lays out a legal framework for NHS organisations to involve and consult patients in the planning, development and provision of services. This framework also ensures that patients are engaged in proposals for changes to services and decisions affecting the operation of services. This is supported by National Standards, Local Action (DoH, 2004b), which incorporates core and development standards for NHS health care. It is also supported by The NHS Improvement Plan: Putting People at the Heart of Public Services (DoH, 2004a), which is committed to personalising the health service by improving the personal experience of patients.
A component of The NHS Plan is the requirement of every NHS trust to carry out an annual survey of patients’ experiences. As part of this National Survey Programme thousands of patients are asked about their experiences, providing each local trust with a wealth of information. A fundamental purpose of the survey is to use the results to bring about real changes for patients. The Patients Accelerating Change Project (PAC) is a joint initiative between Picker Institute Europe and the NHS Clinical Governance Support Team. The project supports trusts to actively use their survey results and involve patients as an integral part of the change process to improve the patients’ experience.
The pilot PAC project involved nine acute NHS trusts, and in June 2004 it expanded to involve almost 50 more in a second wave. During the pilot phase, information from the national patient surveys and other sources such as complaints, issues raised through Patient and Liaison Services (PALS) and patient suggestion boxes, highlighted priority areas for trusts to improve. Some of these included information on postoperative pain management, a new visiting system, and better information and signage in emergency departments. Drawing on some of the learning from the PAC project, this article suggests a framework for sustaining effective partnership-working with patients and is illustrated by current practical examples from across the NHS.
When considering how to involve patients, it is important to identify the most appropriate method to elicit ‘real’ involvement and engagement. Careful preparation and planning time needs to be invested in the design of any activity with patients, if a broad section of views is being sought. NHS staff often report issues with the practicalities of achieving this. Getting started may mean thinking differently and not assuming patients will travel to organisations. Getting people involved in health care issues while pursuing their everyday community activity is often the answer to incentivising involvement.
There are several points that need to be considered when recruiting patients:
- Think about the target group and where they might be found, for example libraries, shopping centres, post offices, community centres, public events;
- Hold ‘market stall’ events in local shopping areas using it as an opportunity to ask people about their experiences while in hospital (Box 1);
- Posters or information stands displayed in public areas to advertise an activity and attract volunteers;
- Go to where patients are waiting for treatment - an ‘opportunistic approach’, for example in outpatient and pharmacy waiting areas;
- Nurses are in an ideal communication role as they have constant links with patients;
- Make use of contacts in the community, for example health and social care workers;
- Use the media - local press/radio, TV/hospital radio and ask for volunteers or people with a ‘story to tell’;
- Contact groups in local communities such as patient associations, carers forums, ethnic minority groups, faith groups, parent groups, community representatives and outreach workers;
- Use local networks - generally there are umbrella organisations of voluntary and community groups, with large memberships;
- Hold local events, for example coffee mornings, parties and meals;
- Speak to PALS managers - they may know of patients who are willing to help;
- Use existing patient or carer representatives to recruit other volunteers;
- Consider recruiting and training patients to talk to other patients.
Before embarking on any activity it is worth checking what information the organisation and neighbouring NHS organisations have already obtained from patients. It may be appropriate to establish an ‘involvement and consultation’ diary in which all patient feedback and activity is recorded for easy reference in the future. Some of the trusts involved in the PAC project developed a database of patients who were willing to be involved in activities. Box 1 illustrates how one trust went about this.
Once the recruitment of patients has been planned, careful preparation needs to be made for their effective involvement. When wanting to involve patients in an activity think about how to engage as many as possible. This avoids tokenism and will enable patients to offer each other support and encouragement. It is also important to target patient skills appropriately. For example, some patients may want to give their views on a one-off basis, whereas others may want to be involved over the longer term.
By involving patients at the earliest stage of a project, from the set-up phase, they will be familiar with developments from the outset and therefore be likely to have the confidence to contribute to and have an influence over further stages. This can prove a challenge in health care organisations. True patient involvement may end up being sacrificed as a result of unrealistic timescales and the need to get the data analysed and written up. Involving patients can be a time-consuming process, so setting the time aside to do this properly is necessary in order to achieve a truly patient-centred service.
Effective patient involvement is about employing a variety of methods in order to maximise the opportunity to improve services. There is no single correct way to involve patients and one method does not fit all. Consideration needs to be given to the most suitable method to obtain patients’ views and it may be appropriate to use a variety of methods to engage different types of patients. For example, a focus group methodology will exclude people who are housebound, so thought needs to be given to supplementing focus group work with individual interviews for those who are unable to attend.
Patients must be fully informed beforehand to ensure that they are happy to take part in the activities planned. For example, some patients may only wish to be part of a single-gender focus group, others may prefer to be interviewed on an individual basis. One important point is to allow plenty of time to prepare and plan for involving patients to ensure their needs are met. It is worth putting the effort and time into involving patients to ensure services are developed to meet their needs and to benefit all.
The ‘five-step cycle’
As the Patients Accelerating Change project has progressed, key strategies have been identified that encourage patients to become involved and demonstrate the important role they have to play in shaping a health service that is truly responsive to individual needs. The ‘five-step cycle’ (Fig 1) is a guide to help support the development of effective partnership working between patients and NHS organisations and help sustain it once it has been established.
From the onset of any work involving patients, it is essential that patients clearly understand what is expected of them.
There are several key action points to consider:
- Set very clear aims and objectives. This will enable patients to make an informed decision about whether or not and to what extent they may wish to participate;
- Explore with patients what information will help to inform and prepare them beforehand. Make this as jargon-free as possible;
- Be clear about the role that you want patients to play. Are they to offer a personal perspective or are they being asked to work with other patients to present a broader view?
- Agree ground rules (see for example Ground Rules, Barnsley District Hospital, www.cgsupport.org);
- Aim for openness among the whole group and to integrate patients as equal members;
- Identify and introduce a link and support person for every patient. Provide contact numbers in case they have any further questions;
- Agree time commitments and contributions for all team members.
The individual training and support needs of both patients and staff should be clearly identified from the outset and steps should be taken within organisations to meet these needs:
- When the topic allows it, aim to have joint training and briefing sessions between health care professionals and patients;
- Be flexible with the timing and location of training and support, and access to it;
- Provide training in methods that will be used, such as critical appraisal skills and training for assessing the implications of research papers;
- If patients are recruited to interview other patients then consider what specific training and support might be required (see Case Study 2)
The emphasis is placed on both patients and staff having a particular and unique contribution to make.
Both patients and staff should be allowed to share their views and all should be respected:
- Patients have equal rights to contribute to the agenda of meetings - invite patients to add their own items;
- Chairs of the meetings to be chosen carefully. Ensure patients are able to contribute and actively participate in the selection process;
- Where appropriate, consider joint chairing of meetings between the staff and patients;
- Consider different formats for meetings, for example subgroups;
- Make sure that contributions from patients are correct in the minutes. If using titles in the group membership, remember that patients also have titles;
- Regularly review and feed back the group’s achievements and actions to all;
- Patients want to see real changes as a result of the time and effort they expend on attending meetings, events and so on. If this is done well, it will provide a good foundation for further involvement.
An important thing to note about evaluation is that it is not a bolt-on to the main part of the activity, but an integral part of the initial planning stage.
It is important not to focus purely on evaluating changes that have been made in services, using the service prior to the change as a baseline, but also to include an evaluation of the experience of working in partnership with patients:
- Is the partnership succeeding between patients and staff? Explore this from both perspectives. Were patients ‘involved’ throughout the activity in all stages, from conception to completion?
- Document the progress of the activity at every stage of the process and allow free-flowing discussions between all at meetings;
- Allow frustrations to be shared, ensuring mutual support is available for all;
- Give balanced feedback that is critically constructive.
It is vital throughout all the steps to revisit the overall aim of what the group initially set out to achieve: - Jointly agree the next steps required to improve partnership working; - Acknowledge the contribution of all group members; - Agree methods to feed back to patients, staff and all of those involved; - Consider how to communicate the results of the work to a wider audience both within and outside the trust, if applicable.
Checklist for patient involvement
Before starting any activity that is going to involve patients, be clear about what is being asked of them. Important points to check are:
- Is everyone clear about the purpose of the project, its aim and objectives?
- How easy is it going to be to obtain a cross-section of views? Plan where to go to gather the information that is needed;
- Think carefully about the recruitment of patients;
- Take time to consider which, of a variety of methods, will give the breadth of information and views from patients that is required;
- Involve patients in designing any tools that may be used to gather their views;
- Are appropriate resources and support available to actively engage with patients?
- Consider the four ‘Rs’ of patient involvement: Remit, Role, Relationships and Responsibilities. Is everybody clear? (Modernisation Agency Leaders Guide, 2002)
- Involve patients at the beginning and throughout every stage of the activity;
- Capture lessons learnt as the activity progresses. Who was involved? How and what worked well? What needs to be done differently next time?
Persuading patients to give up their free time to become involved in NHS activities can be challenging. However, the chances of succeeding can be increased through careful planning, forethought and by treating patients with respect. This ‘five-step cycle’ provides a clear framework with practical tips on building and sustaining effective partnership working with patients. It is worth remembering that by volunteering to become involved, patients are doing organisations a favour. They are giving their time to help ensure that service changes organised ‘for’ patients become changes ‘with’ patients.
Each week Nursing Times publishes a guided learning article with reflection points to help you with your CPD.
After reading the article you should be able to:
- Be aware of the policies that have influenced an increase in patient involvement;
- Recognise the different approaches that can be used to obtain patients’ views;
- Be able to describe what partnership working is and the issues that can influence its effectiveness;
- Become familiar with the five-step cycle and how it can be used to sustain effective partnership working.
Use the following points to write a reflection for your PREP portfolio:
- What was it that made you decide to read this article?
- What you have learnt about partnership-working and using the five-step cycle?
- Find out how your own organisation involves patients in partnership-working;
- Describe how what you have learnt can be used to improve involvement with your patient group;
- How will you follow up this learning?
Box 1. Case study 1
Hinchingbrooke Health Care NHS Trust in Huntingdon, Cambridgeshire used events in local market towns to raise awareness of patient and public involvement activities. A stall was hired on market day and was manned by trust staff, who were available to answer questions and concerns as well as encourage people to use their experiences to help improve and develop services. More than 100 people gave their contact details, resulting in a database of people willing to support the hospital’s patient and public involvement work.
Box 2. Case study 2
Barnet & Chase Farm NHS Trust recruited patient representatives to carry out patient surveys. The representatives went on wards and into departments to survey patients and to help those who were not able to complete the questionnaire by themselves. Prior to this work, training and support sessions were run for patient representatives emphasising the importance of confidentiality and appropriate action, for example identifying themselves to the person in charge and checking if all patients were well enough to be seen. Although a time-consuming piece of work, it was worthwhile - patients may be more willing to express their views to their peers than to those involved in the service. When planning this type of activity it is important to remember that patient volunteers are busy people too - they also have home lives.
- This article has been double-blind peer-reviewed.
For related articles on this subject and links to relevant websites see www.nursingtimes.net