Common Conditions Affecting the Hand and Wrist PSP Protocol

Purpose of the PSP and background

The purpose of this protocol is to set out the aims, objectives and commitments of the Common Conditions Affecting the Hand and Wrist Priority Setting Partnership (PSP) and the basic roles and responsibilities of the partners therein. 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 and Care 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.

In 2015 the British Society for Surgery of the Hand (BSSH) Research Committee discussed the difficulties faced with obtaining large scale funding for hand surgery research. In a sub-specialty that historically has had a relatively poor track record of undertaking large multi-centre randomised trials, recent activity in scaphoid and wrist fractures, as well as fingertip injuries proved that there was an appetite to complete this type of research. In addition, a call from the NIHR for research in the fields of Dupuytren’s disease and wrist fractures confirmed that funding bodies were also aware that hand problems are a significant problem with the potential to cause significant morbidity. However, concern was raised that the right questions were not necessarily being asked. Professor Abhilash Jain initially proposed a PSP after his experience of his colleagues completing PSPs in other topics. The idea was supported by the Research Committee and the BSSH confirmed their financial support in April 2015.

Aims and objectives of the Common Conditions Affecting the Hand and Wrist PSP

The aim of the Common conditions affecting the hand and wrist PSP is to identify the unanswered questions about the management of common conditions that affect adult hands and wrists, from patient and clinical perspectives and then prioritise those that patients and clinicians agree are the most important.

The objectives of the Common Conditions Affecting the Hand and Wrist PSP are to:

• work with patients and clinicians to identify uncertainties about the management of Common Conditions Affecting the Hand and Wrist
• 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 spectrum of this PSP is deliberately broad in an attempt to include all aspects of adult hand conditions in the UK. Questions relating to conditions that may have distant effects in the hands, but are not routinely managed by hand specialists (for example skin conditions that affect the skin of the hand such as eczema or skin cancer) will not be included in this PSP. These conditions will often be managed by other specialties (for example dermatology). However, if the question relates to a causative condition that results in a problem routinely treated by hand specialists (for example the weakness and dysfunction in the hand following an event in the brain such as a stroke), these questions will be retained for further prioritisation. Members of the Steering Group will review all submissions and consider their relevance to this PSP along this guiding principle. Where questions are identified that are not deemed appropriate for further prioritisation these will be forwarded (where possible) to relevant interested parties.

The Steering Group

The Common Conditions Affecting the Hand and Wrist PSP PSP will be led and managed by the following:

Patient representatives:

• Christopher Delaney
• Joan Horsey
• David Skilton
• Sheila Wade
• Gillian Walton

Clinical representatives:

• Timothy Davis
• Dominic Furness
• Grey Giddins
• Abilash Jain
• Alexia Karantana
• Donna Kennedy
• Debbie Larson
• Ryan Trickett

The Partnership and the priority setting process will be supported and guided by:

• The James Lind Alliance (JLA)
  
  • Katherine Cowan

The Partnership will be coordinated by

• Judith Rogers

The Steering Group includes representation of patient/carer groups and clinicians.

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.

Additional members of the team who will have key roles in the completion of the Common Conditions Affecting the Hand and Wrist PSP, particularly during the checking of potential uncertainties:

• Douglas Grindlay – Information Specialist
• Hawys Lloyd-Hughes

The 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 may include the following groups:

• people who have had any hand or wrist problem that could be considered as a Common Condition Affecting the Hand and Wrist
• carers of people who have had any of the Common Conditions Affecting the Hand and Wrist
• medical doctors, nurses and professionals allied to medicine with clinical experience of treating Common Conditions Affecting the Hand and Wrist; particularly but not limited to hand surgeons, hand therapists, occupational therapist and physiotherapists.

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 partners, guided by the PSP’s aims and objectives. More details and examples can be found at www.jla.nihr.ac.uk

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 Common Conditions Affecting the Hand and Wrist PSP and may be invited to attend and participate in an initial stakeholder meeting if this is being arranged.

Step 2: Identifying treatment uncertainties

Each partner will identify a method for soliciting from its members questions and uncertainties of practical clinical importance relating to the treatment and management of Common Conditions Affecting the Hand and Wrist. A period of 3 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 Ryan Trickett, Alexia Karantana and Douglas Grindlay 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 Ryan Trickett, Alexia Karantana, Hawys Lloyd-Hughes and Douglas Grindlay 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 – i.e. 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. If identified these answerable questions will be the basis of simple information circulars delivered to the stakeholder and partnership members; or if appropriate form the basis of novel systematic reviews.

Uncertainties which are not adequately addressed by previous research will be collated and recorded (on a template supplied by the JLA) by Ryan Trickett, Alexia Karantana and Douglas Grindlay. 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 cause, diagnosis, treatment and management of Common Conditions Affecting the Hand and Wrist. 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, the Top 10 prioritised uncertainties, will 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 Common Conditions Affecting the Hand and Wrist 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. Much of the dissemination will occur directly to the members of the stakeholder and partner groups. If is anticipated that the priorities will form the basis of numerous formal presentations to interested parties and peer reviewed publications. The BSSH Research Committee will use the identified priorities as a framework to guide nationally directed research in hand surgery.

Publicity

As well as alerting funders, partners and Steering Group members are encouraged to publish the findings of the Common Conditions Affecting the Hand and Wrist 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.

Signed by the Steering Group

The Steering Group agreed this protocol on 31 May 2016.