Purpose of the PSP and background
The purpose of this protocol is to set out the aims, objectives and commitments of the Broken Bones of the Upper Limb in People over 50 (Fractures of the Shoulder, Arm or Wrist) Priority Setting Partnership (PSP). It is recommended that the Protocol is reviewed by the Steering Group and updated on at least a quarterly basis.
The James Lind Alliance (JLA) is a non-profit making initiative, established in 2004. It brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs). These partnerships identify and prioritise uncertainties, or ‘unanswered questions’, about the effects of treatments that they agree are the most important. The aim of this is to help ensure that those who fund health research are aware of what really matters to both patients and clinicians. The National Institute for Health Research (NIHR – www.nihr.ac.uk) funds the infrastructure of the JLA to oversee the processes for priority setting partnerships, based at the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC), University of Southampton.
This PSP is looking at broken bones (fractures) in the shoulder (collarbone and shoulder girdle), arm, elbow, forearm and wrist in people over 50. Fractures involving the upper limb are very common and often have long-lasting effects. Wrist fractures alone affect 100,000 people per year in the UK.
Injuries affecting these parts of the body, either temporarily or permanently, can lead to significant disability. The treatment received is very important in minimising this.
These fractures often occur as a result of low energy injuries such as falls from a standing height. This is often the case with patients over 50. They can also occur as a result of high-energy injuries such as those related to sports, as well as those involved in road traffic accidents.
The treatment for these injuries may involve surgery or not (often called ‘operative’ or ‘non-operative’). Non-operative treatments include analgesia (pain relief), casting (i.e., placing the affected part into a plaster cast for some weeks) and rehabilitation (such as physiotherapy or occupational therapy). Surgical procedures may involve fixing a fracture with the insertion of metal plates and screws, rods passed on the inside of the bone, or even, perhaps, bone replacement using an artificial joint.
There is currently a lack of research evidence to guide the care and treatment of patients with upper limb fractures. The period immediately after the fracture (initial treatment), the active treatment phase (non-operative or operative) and rehabilitation (restoring limb function and confidence) are three distinct phases in the patient journey. We will identify key research questions in each of these areas.
Aims and objectives of the Broken Bones in Older People PSP
The aim of the PSP is to identify the unanswered questions about the best management of upper limb fractures in people over 50. We will then prioritise those that patients and clinicians agree are the most important.
These questions can relate to any aspect of living with, caring for, or treating these injuries, such as pain relief, nutrition, rehabilitation, surgery, anaesthesia, information for patients and carers and the emotional impact of fractures.
This PSP will not cover questions connected to prevention of fractures. This includes medications and investigations for prevention of fractures.
We will also not ask for questions relating to falls prevention (investigation and treatment). However, questions about the ‘fear of falling’ and its social consequences will be included.
The objectives of the Broken Bones of the Upper Limb in People over 50 PSP are to:
- work with patients, carers and clinicians to identify uncertainties about the effects and treatment of Broken Bones of the Upper Limb in People over 50
- to agree by consensus a prioritised list of those uncertainties, for research
- to publicise the results of the PSP and process
to take the results to research-commissioning bodies to be considered for funding
The Steering Group
The Broken Bones of the Upper Limb in People over 50 PSP will be led and managed by the following:
Patient representative/s:
- Debbie Langstaff
- Jenny Gould
- Liz Baird
- Philip Bell
- Richard Grant
Clinical representative/s:
- Steve Gwilym - Fracture of the upper limb surgeon, Oxford University Hospitals and Oxford Trauma, University of Oxford
- Matthew Costa - Fracture surgeon and professor of Orthopaedic Trauma, Oxford University Hospitals and Oxford Trauma, University of Oxford
- Mark Williams - Physiotherapist and Programme Lead Physiotherapy, Oxford Brookes University
- Stuart White - Consultant Anaesthetist
- Miguel Fernandez - Specialty Registration in Trauma and Orthopaedic
- Zoe Paskins - Consultant Rheumatologist and Clinical lead for osteoporosis service, Keele University, Haywood Hospital, Stoke-on-Trent
- Jo Holmes - Clinical Specialist Hand Therapist
The Partnership and the priority setting process will be supported and guided by:
- Catherine White – The James Lind Alliance (JLA)
The PSP will also be supported by:
- Laura Arnel, Oxford Trauma Administrative Assistant as PSP Co-ordinator
- Warren Sheehan, Specialist trauma physiotherapist, as Information Specialist
The Steering Group will agree the resources, including time and expertise that they will be able to contribute to each stage of the process. The JLA will advise on this.
The wider Partners
Organisations and individuals will be invited to be involved with the PSP as partners. Partners are groups or individuals who will commit to supporting the PSP by disseminating the PSP survey and helping the PSP to gather questions and uncertainties of practical clinical importance relating to the treatment and management of the health problem in question. Partners represent the following groups:
- people over 50 who have had fractures of their upper limb
- carers of people over 50 who have had fractures of their upper limb
- medical doctors, nurses and professionals allied to medicine with experience of managing patients over 50 with fractures of their upper limb
It is important that all organisations which can reach and advocate for these groups should be invited to become involved in the PSP. The JLA Adviser will take responsibility for ensuring the various stakeholder groups are able to contribute equally to the process.
Exclusion criteria
Some organisations may be judged by the JLA or the Steering Group to have conflicts of interest. These may be perceived to adversely affect those organisations’ views, causing unacceptable bias. 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 stages through which the PSP aims to fulfil its objectives. The process is iterative and dependent on the active participation and contribution of different groups. The methods adopted in any stage will be agreed through consultation between the Steering Group members, guided by the PSP’s aims and objectives. More details can be found in the Guidebook section of the JLA website at www.jla.nihr.ac.uk where examples of the work of other JLA PSPs can also 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 Broken Bones of the Upper Limb in People over 50 PSP and may be invited to attend and participate in an initial stakeholder meeting if this is being arranged.
We have identified the following partner organisations with link to the Steering Group participants:
- Arthritis Research UK (ARUK)
- Association of Anaesthetists of Great Britain and Ireland (AAGBI)
- Association of Trauma and Orthopaedic Chartered Physiotherapists (ATOCP)
- British Association of Hand Therapists (BAHT)
- British Orthopaedic Association (BOA)
- NIHR Collaboration for Leadership in Applied Heath Research and Care West Midlands Patient & Public
Involvement (CLAHRC WM PPI) - National Osteoporosis Society (NOS)
- Fragility Fractures Network (FFN)
- Orthopaedic Trauma Society (OTS)
- University/User Teaching and Research Action Partnership (UNTRAP)
- Welsh Arthritis Research Network
The Steering Group will identify other partner organisations to become involved with this PSP. This list will be
available on the PSP website.
Step 2: Identifying uncertainties
Each partner will identify a method for soliciting from its members questions and uncertainties of practical clinical importance relating to broken bones of the upper limb. A period of 18 months will be given to complete this exercise.
The methods may be designed according to the nature and membership of each organisation, but must be as transparent, inclusive and representative as practicable. Methods may include membership meetings, email consultation, postal or web-based questionnaires, internet message boards and focus group work.
Existing sources of information about treatment uncertainties for patients and clinicians will be searched. These can include question-answering services for patients and carers and for clinicians; research recommendations in systematic reviews and clinical guidelines; protocols for systematic reviews being prepared and registers of ongoing research.
The starting point for identifying sources of uncertainties and research recommendations is NHS Evidence: www.evidence.nhs.uk.
Step 3: Refining questions and uncertainties
The Steering Group will need to have agreed exactly who will be responsible for this stage – the JLA can advise on the amount of time likely to be required for its execution. The JLA will participate in this process as an observer, to ensure accountability and transparency.
The consultation process will produce “raw” unanswered questions about diagnosis and the effects of treatments. These raw questions will be assembled and categorised and refined by the Information Specialist into “collated indicative questions” which are clear, addressable by research and understandable to all. Similar or duplicate questions will be combined where appropriate.
Systematic reviews and guidelines will be identified and checked by the Information Specialist to see to what extent these refined questions have, or have not, been answered by previous research. Sometimes, uncertainties are expressed that can in fact be resolved with reference to existing research evidence - ie they are "unrecognised knowns" and not uncertainties. If a question about treatment effects can be answered with existing information but this is not known, it suggests that information is not being communicated effectively to those who need it. Accordingly, the JLA recommends strongly that PSPs keep a record of these 'answerable questions' and deal with them separately from the 'true uncertainties' considered during the research priority setting process.
Uncertainties which are not adequately addressed by previous research will be collated and recorded on a template supplied by the JLA by the Information Specialist. This will demonstrate the checking undertaken to make sure that the uncertainties have not already been answered. This is the responsibility of the Steering Group, which will need to have agreed personnel and resources to carry this accountability. 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.
Step 4: Prioritisation – interim and final stages
The aim of the final stage of the priority setting process is to prioritise through consensus the identified uncertainties relating to the treatment or management of broken bones of the upper limb in people over 50. This will be carried out by members of the Steering Group and the wider partnership that represents patients and clinicians.
- The interim stage, to proceed from a long list of uncertainties to a shorter list to be discussed at the final priority setting workshop (e.g. up to 30), may be carried out over email or online, whereby organisations consult their membership and choose and rank their top 10 most important uncertainties. There are examples of how other PSPs have achieved this at www.jla.nihr.ac.uk in the Key Documents of the Anaesthesia and Perioperative Care PSP section and the Childhood Disability PSP section.
- The final stage, to reach, for example, 10 prioritised uncertainties, is likely to be conducted in a face-to-face meeting, using group discussions and plenary sessions.
- The methods used for this prioritisation process will be determined by consultation with the partner organisations and with the advice of the JLA Adviser. Methods which have been identified as potentially useful in this process include: adapted Delphi techniques; expert panels or nominal group techniques; consensus development conference; electronic nominal group and online voting; interactive research agenda setting and focus groups.
The JLA will facilitate this process and ensure transparency, accountability and fairness. Participants will be expected to declare their interests in advance of this meeting.
Dissemination of findings and research
Findings and research
It is anticipated that the findings of the PSP will be reported to funding and research agenda setting organisations such as the NIHR and the major research funding charities. Steering Group members and partners are expected to develop the prioritised uncertainties into research questions, and to work to establish the research needs of those unanswered questions to use when approaching potential funders, or when allocating funding for research themselves, if applicable.
Publicity
As well as alerting funders, partners and Steering Group members are encouraged to publish the findings of the PSP using both internal and external communication mechanisms. The Steering Group may capture and publicise the results through descriptive reports of the process itself in Plain English. This exercise will be distinct from the production of an academic paper, which the partners are also encouraged to do. However, production of an academic paper should not take precedence over publicising of the final results.
Agreement of the Steering Group
This protocol was approved by the Steering Group on 7th December 2017.