Community Nursing PSP protocol

Purpose of the PSP and background

The purpose of this protocol is to clearly set out the aims, objectives and commitments of the Community Nursing Priority Setting Partnership (PSP) in line with James Lind Alliance (JLA) principles. The Protocol is a JLA requirement and will be published on the PSP’s page of the JLA website. The Steering Group will review the Protocol regularly and any updated version will be sent to the JLA.

The JLA is a non-profit making initiative, established in 2004. It brings patients, carers and clinicians together in PSPs. These PSPs identify and prioritise the evidence uncertainties, or ‘unanswered questions’, that they agree are the most important for research in their topic area. Traditionally PSPs have focused on uncertainties about the effects of treatments, but some PSPs have chosen to broaden their scope beyond that. The aim of a PSP is to help ensure that those who fund health research are aware of what really matters to patients, carers and clinicians. The National Institute for Health and Care Research (NIHR – www.nihr.ac.uk) coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC), University of Southampton.

The purpose of the Community Nursing Priority Setting Partnership is to define the research priorities for the profession in partnership with people who access community nursing services and their carers. The focus of the Community Nursing Priority Setting Partnership is on community nurses who are providing care to adults in their own homes, in community clinics or in residential homes. Community nurses have knowledge and experience of supporting people with multi-morbidities, chronic and long-term conditions, such as heart failure, COPD, multiple sclerosis, Parkinson ’s disease, cancer and diabetes. They provide support to patients and carers in the management of symptoms and exacerbations [1]. This support increases the quality of life of people living with multiple morbidities, promoting their independence, as well as a service that is patientcentred, supportive and appropriate at all stages from diagnosis to end of life [2].

NHS England identify that as a profession “Community nursing encompasses a diverse range of nurses and support workers who work in the community including district nurses, intermediate care nurses, community matrons and hospital at home nurses” [3]. The breadth of community nursing means that it is essential that this project has a well-defined scope with clear boundaries. Funding for the Community Nursing PSP is being provided by the National Institute for Health and Care Research Applied Research Collaboration (NIHR ARC) [4]. The ARC’s aim to support applied health and care research that responds to, and meets, the needs of local populations and local health and care systems, to improve outcomes for patients and the public; improve the quality, delivery and efficiency of health and care services; and increase the sustainability of the health and care system both locally and nationally. Specific priority research areas for NIHR ARCs focus on the challenges of an ageing society; multimorbidity; and the increasing demands placed on our health and care system; these are all central to the community nursing PSP [4]. In addition, the ARC aims to deliver national level impact through significant collaboration between the ARCs, with individual ARCs providing national leadership within their fields of expertise. This community nursing PSP provides an exemplar of this collaboration, with ARC partners including Oxford and Thames Valley, Kent, Northumbria and the East Midlands. It was agreed by all partners that the James Lind Alliance process offered a robust tried and tested methodology that was well respected by research funders and the wider health and social care research community.

Aims, objectives and scope of the PSP

Community nursing centres around holistic nursing care and takes account of the whole person, in terms of their physical, mental, psychological, social and emotional health and wellbeing, to provide support to patients and carers and improve their quality of life [2,3].

The aim of the community nursing PSP is to identify the unanswered questions about community nursing from patient, carer and clinical perspectives and then prioritise those that patients, carers and clinicians agree are the most important for research to address.

The objectives of the PSP are to:

• work with patients, carers and clinicians to identify uncertainties about community nursing in England, in relation to the provision of nursing care to adults in their own homes, in community nurse led clinics (such as wound care clinics etc..), or in residential homes
• to agree by consensus a prioritised list of those uncertainties, for research
• to publicise and disseminate the results of the PSP and process
• to take the results to research commissioning bodies to be considered for funding
• To enable community nurses to expand and enhance their involvement in research
• To change community nurses’ clinical practice through an increased engagement with the evidence-base
• To increase national collaboration and impact through partnerships with funders, community nursing organisations and healthcare providers
• To extend and enhance patient and public involvement in our work.

The scope of the community nursing PSP is defined as:

• Including any uncertainties around community nursing in England that relate to the care of adults (over 18 years) being cared for in their own homes, in community clinics or in residential homes by NHS community nurses
• perspectives reflective of the practice-based roles of community nurses, including district nurses
• physical and mental health and the areas of overlap between them;
• perspectives of patients and carers who access community services in relation to the service provided, information, assessments, interventions and outcomes provided by those services.
• questions relating to Covid-19 and its impact on community nursing care

The PSP will exclude from its scope questions about:

• community nursing outside England (the 70@70 programme and ARC covers England, not the UK), although evidence from the UK and globally will be reviewed and considered where it adequately addresses ‘unanswered questions’
• community nursing practice based outside the NHS i.e. private, voluntary and independent sectors;
• people accessing community nursing services who are under the age of 18
• specific Government policies across England for health and social care, unless it’s an issue that requires the generation of evidence through research to address it
• the pre- and post-registration education of community nursing
• Training and education and professional development of community nurses
• services with a commercial interest
• Non-community nurses, school nurses, health visitors, practice nurses, and community nurses working in the following areas: children’s nursing, mental health, community midwifery and learning disabilities, to narrow the scope of the PSP
• Patients being cared for in the following settings: secondary care; nursing homes
• Adults being cared for in community settings who are under the age of 18

Every effort will be made to ensure that submitted questions that are out of scope are captured and shared with relevant parties that may be able to take them forward. The Steering Group will not prioritise any one condition or area of practice over another. Once the Top 10 research priorities are identified, the NIHR ARC and the 70@70 will be asked to review and work with them with a view to translating them into priority questions directly related to their area of specialist practice.

The scope of the project will reflect the scope of community nursing practice. Community nursing includes community and district nurses. District nurses typically look after older people, those recently discharged from secondary care and people who are terminally ill or have physical disabilities, in their homes or community settings. Care might include intravenous antibiotic infusions at home and wound care and helping with the management of long-term conditions. Community matrons work closely with patients to provide, plan and organise their care. They mainly work with those with a serious long-term or complex range of conditions (5).

Initial discussions about the potential scope of the PSP were held at a virtual launch event on 21st July 2020 and were agreed by the Steering Group this meeting; however, the scope may be refined further as the process progresses and uncertainties are submitted.

The Steering Group is responsible for finalising and agreeing the scope of the PSP, and for discussing what implications the scope of the PSP will have for the evidence-checking stage of the process. Resources and expertise will be put in place to undertake this evidence checking.

The Steering Group

The Steering Group includes membership of patients and carers and clinicians, as individuals or representatives from a relevant group.

The community nursing PSP will be led and managed by a Steering Group involving the following:

Patient and carer representatives:

Deb Smith (Leamington Spa)
Hameed Khan (Manchester)
Dianna Moylan (Milton Keynes)
Sarah Ansell (Kent)

Clinical representatives:

Oxford Health NHS Foundation Trust (OHFT)

Marie Crofts, Chief Nurse
Emily Bishop, Matron for Community Nursing
Sarah Barton (RNU) DN Clinical Development Lead
Helen Squires (RNU) DN Clinical Development Lead
Vicki Howarth (RNU) DN Clinical Development Lead

Kent Community NHS Foundation Trust (KCHFT)

Carly Edmed, AD Clinical Standards
Annmarie Hirst, Local Clinical resource Manager
Pamela Homewood, Nursing Team Leader

Northumbria Healthcare NHS Foundation Trust (NHCT)

Christine Platton, Director of Nursing
Jeanette Milne, Chief Community Matron
Claire Tasker, Clinical Neighbourhood Matron
Christina Broadbent, Clinical Operations Lead

Leicestershire Partnership NHS Trust (LPFT)

Tracy Yole, Deputy Head of Nursing, Community Services
Anita Kilroy-Findley, Clinical Lead, Tissue Viability
Charlotte Sumnall, Senior District Nurse

Others:

Lee Tomlinson, Community Healthcare Alliance of Research Trusts in England (CHART)

70@70 project leads:

Lee Tomlinson, KCHFT
Cathy Henshall, OHFT
Claire Armitage, LPFT
Louise Jones, NHCT

JLA PSP Coordinator:
Jo Jackson

JLA Adviser and Chair of the Steering Group:
Suzannah Kinsella

JLA Information Specialist:
Kristina Staley

The Steering Group will agree the resources, including time and expertise that they will be able to contribute to each stage of the process, with input and advice from the JLA.

Partners

Organisations and individuals will be invited to be involved with the PSP as partners. Partners are organisations or groups who will commit to supporting the PSP, promoting the process and encouraging their represented groups or members to participate. Organisations which can reach and advocate for these groups will be invited to become involved in the PSP. Partners represent the following groups:

• adult patients over the age of 18 who access NHS community nursing services and their carers
• perspectives reflective of the practice-based roles of community nurses, including district nurses
• people caring for people with physical and mental health conditions and the areas of overlap
• providers and purchasers of community nursing services
• policy makers in areas relevant to community nursing
• managers of community nursing services.
• Royal College of Nursing
• Enabling Research in Care Homes (ENRICH)
• General Practitioners
• National Institute for Health and Care Research (NIHR) 70@70 (Sharon Barrett)
• NIHR Applied Research Collaborations(ARC) (Paula Wray)
• Crystal Oldman or representative - Queens Nursing Institute
• Libby Horridge – National District Nursing Network
• Community Nurse Executive Network – Crystal Oldman to find us a representative.
• Steph Lawrence – Leeds Community Executive Director of Nursing and AHPs and Leeds Community Healthcare and Leeds GP Confederation. Has links with NDNN and CNEN.
• Healthwatch
• Royal College of Nursing District and Community Nursing forum
• Royal College of General Practitioners
• Age UK

Exclusion criteria

Some organisations may be judged by the JLA or the Steering Group to have conflicts of interest. These may be perceived to potentially cause unacceptable bias as a member of the Steering Group. As this is likely to affect the ultimate findings of the PSP, those organisations will not be invited to participate. It is possible, however, that interested parties may participate in a purely observational capacity when the Steering Group considers it may be helpful.

The methods the PSP will use

This section describes a schedule of proposed steps through which the PSP aims to meet its objectives. The process is iterative and dependent on the active participation and contribution of different groups. The methods used in any step will be agreed through consultation between the Steering Group members, guided by the PSP’s aims and objectives. More details of the method are in the Guidebook section of the JLA website where examples of the work of other JLA PSPs can be seen.

Step 1: Identification and invitation of potential partners

Potential partner organisations will be identified through a process of peer knowledge and consultation, through the Steering Group members’ networks. Potential partners will be contacted and informed of the establishment and aims of the community nursing PSP.

Step 2: Awareness raising

PSPs will need to raise awareness of their proposed activity among their patient, carer and clinician communities, in order to secure support and participation. Depending on budget, this may be done by a faceto-face meeting, or there may be other ways in which the process can be launched, e.g. via social media. It may be carried out as part of steps 1 and/or 3. The Steering Group should advise on when to do this. Awareness raising has several key objectives:

• to present the proposed plan for the PSP
• to generate support for the process
• to encourage participation in the process
• to initiate discussion, answer questions and address concerns.

Step 3: Identifying evidence uncertainties

The community nursing PSP will carry out a consultation to gather uncertainties from patients, carers and clinicians. A period of three months will be given to complete this exercise (which may be revised by the Steering Group if required).

The community nursing PSP recognises that the following groups may require additional consideration: Residents living in care homes are under-represented in research studies. The community nursing PSP will engage with the national ENRICH network to ensure that this frequently marginalised group is given a voice.

The Steering Group will use the following methods to reach the target groups: Due to the Covid-19 pandemic face-to-face meetings usually conducted during the course of a JLA PSP are no longer viable due to the governments social distancing measures that are currently in place. As a result, the Steering Group committee has agreed that, where possible, meeting will be held virtually, via Microsoft Teams or other online meeting forums. Where it is not possible to hold large online workshops and meetings, we will endeavour to hold smaller online group meetings to ensure that the views of all stakeholders are heard and to encourage inclusivity. In addition, surveys will be sent out using online and paper based methods and stakeholders will also be contacted for their views using email communication.

Existing sources of information about evidence of uncertainties relating to community nursing practice will be searched. This evidence may include research recommendations in systematic reviews and clinical guidelines; protocols for systematic reviews being prepared and registers of ongoing research; research reports/literature, practice guidelines and professional documentation.

The starting point for identifying sources of uncertainties and research recommendations is NHS Evidence: www.evidence.nhs.uk

Step 4: Refining questions and uncertainties

The consultation process will produce ‘raw’ questions and comments indicating patients’, carers’ and clinicians’ areas of uncertainty. These raw questions will be categorised and refined by the PSP Information Specialist, Kristina Staley, into summary questions which are clear, addressable by research, and understandable to all. Similar or duplicate questions will be combined where appropriate. Out-of-scope and ‘answered’ submissions will be compiled separately. The Steering Group will have oversight of this process to ensure that the raw data is being interpreted appropriately and that the summary questions are being worded in a way that is understandable to all audiences. The JLA Adviser will observe to ensure accountability and transparency.

This will result in a long list of in-scope summary questions. These are not research questions and to try and word them as such may make them too technical for a non-research audience. They will be framed as researchable questions that capture the themes and topics that people have suggested.

The summary questions will then be checked against evidence to determine whether they have already been answered by research. This will be done by the PSP Information Specialist. The PSP will complete the JLA Question Verification Form, which clearly describes the process used to verify the uncertainty of the questions, before starting prioritisation. The Question Verification Form includes details of the types and sources of evidence used to check uncertainty. The Question Verification Form should be published on the JLA website as soon as it has been agreed to enable researchers and other stakeholders to understand how the PSP has decided that its questions are unanswered, and any limitations of this.

Questions that are not adequately addressed by previous research will be collated and recorded on a standard JLA template by the PSP Information Specialist. This will show the checking undertaken to make sure that the uncertainties have not already been answered. The data should be submitted to the JLA for publication on its website on completion of the priority setting exercise, taking into account any changes made at the final workshop, in order to ensure that PSP results are publicly available.

The Steering Group will also consider how it will deal with submitted questions that have been answered, and questions that are out of scope.

Step 5: Prioritisation – interim and final stages

The aim of the final stage of the priority setting process is to prioritise through consensus the identified uncertainties about community nursing. This will involve input from patients, carers and clinicians. The JLA encourages PSPs to involve as wide a range of people as possible, including those who did and did not contribute to the first consultation. There are usually two stages of prioritisation.

1. Interim prioritisation is the stage where the long list of questions is reduced to a shorter list that can be taken to the final priority setting workshop. This is aimed at a wide audience and is done using similar methods to the first consultation. With the JLA’s guidance, the Steering Group will agree the method and consider how best to reach and engage patients, carers and clinicians in the process. The most highly ranked questions (around 25) will be taken to a final priority setting workshop. Where the interim prioritisation does not produce a clear ranking or cut off point, the Steering Group will decide which questions are taken forwards to the final prioritisation.

2. The final priority setting stage is generally a one-day workshop facilitated by the JLA. With guidance from the JLA and input from the Steering Group, up to 30 patients, carers and clinicians will be recruited to participate in a day of discussion and ranking, to determine the top 10 questions for research. All participants will declare their interests. The Steering Group will advise on any adaptations needed to ensure that the process is inclusive and accessible.

Dissemination of results

The Steering Group will identify audiences with which it wants to engage when disseminating the results of the priority setting process, such as researchers, funders and the patient and clinical communities. They will need to determine how best to communicate the results and who will take responsibility for this. Previous PSPs’ outputs have included academic papers, lay reports, infographics, conference presentations and videos for social media.

It should be noted that the priorities are not worded as research questions. The Steering Group should discuss how they will work with researchers and funders to establish how to address the priorities and to work out what the research questions are that will address the issues that people have prioritised. The dissemination of the results of the PSP will be led by the 70@70 core team.

The JLA encourages PSPs to report back about any activities that have come about because of the PSP, including funded research. Please send any details to jla@soton.ac.uk.

Agreement of the Steering Group

The community nursing PSP Steering Group agreed the content and direction of this Protocol on 21st July 2020.

References

1. National Institute for Health and Care Excellence (2018) Community nursing Emergency and acute medical care in over 16s: service delivery and organisation; NICE available at: https://www.nice.org.uk/guidance/ng94/evidence/9community-nursing-pdf-172397464596

2. Department of Health (2005) The national service framework for long-term conditions. The Stationary Office, London. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1981 14/National_Service_Framework_for_Long_Term_Conditions.pdf

3. NHS England (2015) Framework for Commissioning Community Nursing. Available at: www.england.nhs.uk/wp-content/uploads/2015/10/Framework-for-commissioning-communitynursing.pdf

4. National Institute for Health and Care Research (2020) Collaborating in Applied Health Research. Available at: https://www.nihr.ac.uk/explore-nihr/support/collaborating-in-applied-health-research.htm

5. Foot, Sonala et al. (2014) Managing Quality in Community Healthcare Services. The Kings Fund, London.