Spinal Cord Injury PSP Protocol (Sweden)
Purpose of the PSP and background
The purpose of this protocol is to clearly set out the purpose, objectives and commitments of the Spinal Cord Injury (SCI) in Sweden Priority Setting Partnership (PSP) in line with James Lind Alliance (JLA) principles. The Expert Group will review the Protocol regularly and any updated version will be sent to the JLA.
The SCI in Sweden PSP is instigated by the Gothenburg Competence Centre for SCI, which works to spread and promote evidence-based knowledge and practices among people with a personal or professional interest in SCI. The Gothenburg Competence Centre for SCI is an initiative by Sahlgrenska University Hospital and the University of Gothenburg.
The primary purpose of this PSP is to identify and priorities needs and matters of importance connected to SCI, according to people with SCI (PLEx), their relatives, carers and health professionals working with PLEx in Sweden.
The secondary purpose of this PSP is to identify and prioritise evidence uncertainties, as well as evidence certainties, or ‘knowledge’, which have not (yet) reached or transferred to the target groups.
Objectives and scope of the PSP
The objectives of the PSP are to:
- identify needs and matters of importance connected to SCI, according to PLEx, their relatives, carers and health professionals in Sweden
- identify and prioritise evidence uncertainties, as well as evidence certainties, or knowledge, that has not (yet) reached or transferred to PLEx, their relatives, carers and health professionals working with PLEx in Sweden
- agree by consensus a prioritised list or lists of those needs and matters of importance, for development and education
- agree by consensus a prioritised list or lists of those uncertainties, for research and education
- publicise the results of the PSP and process
- take the prioritised list or lists of uncertainties to research commissioning bodies to be considered for funding.
The Gothenburg Competence Centre for SCI will also use the results to formulate a strategy for their long-term business direction.
The scope of the SCI in Sweden PSP is defined as the following areas of inquiry:
- What is important for you to live a good life? What matters to you?
- Are there areas of life that are not as good as they could be, or that create problems for you in your everyday life?
- What areas in your environment would need to change (e.g. rehabilitation, society) for you to live a good life?
- What questions and concerns never gets answered or do you never find answers to?
These areas of inquiry have been identified following benchmarking with, among others, the following: JLA and Burwood Academy of Independent Living (BAIL) in New Zealand, which have both conducted similar needs and matters of importance inventories which they have also published.
The PSP will exclude from its scope questions about and comments on:
- persons who got their SCI before the age of 3 months
- persons under the age of 18 years
- living or working with SCI outside of Sweden (however, questions and comments concerning travels or international knowledge transfer will not be excluded).
The Expert Group is responsible 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 do this evidence checking.
The Expert Group
The Expert Group includes PLEx, relatives, carers and health professionals working with PLEx in Sweden.
The SCI in Sweden PSP will be led and managed by the Gothenburg Competence Centre for SCI, in cooperation with an Expert Group involving the following:
The project is led and managed by the following:
Gunilla Åhrén, Project Leader, Gothenburg Competence Centre for Spinal Cord Injury
Emelie Axwalter, Project Coordinator, Gothenburg Competence Centre for Spinal Cord Injury
Johanna Wangdell, Information Coordinator, Gothenburg Competence Centre for Spinal Cord Injury
Jeanette Melin, Information Specialist, RISE
Toto Anne Gronlund, JLA James Lind Alliance Adviser and Chair of the Expert Group
The Expert Group will agree the time and expertise that they will be able to contribute to each stage of the process, with input and advice from the JLA.
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.
Organisations and individuals will be invited to take part in the PSP, which represent the following groups and organisations:
- people related to PLEx
- personal assistants or carers of PLEx
- health professionals working with PLEx
- RG Active Rehabilitation
- The Swedish Association for Survivors of Polio, Accident and Injury (RTP).
Some organisations may be judged by the JLA or the Expert Group to have conflicts of interest. These may be perceived to potentially cause unacceptable bias as a member of the Expert 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 Expert 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 methods used in any step will be agreed through consultation between the Expert Group members, guided by the PSP’s aims and objectives.
Step 1: Identification and invitation of potential partners
Potential partner organisations will be identified through a process of peer knowledge and consultation, through the Expert Group members’ networks. Potential partners will be contacted and informed of the establishment and aims of the SCI in Sweden PSP.
Step 2: Awareness raising
The SCI in Sweden PSP will need to raise awareness of their proposed activity among PLEx, their relatives, carers and health professionals working with PLEx in Sweden, in order to secure support and participation. Depending on budget and the Covid-19 situation, this may be done by a face-to-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 Expert 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 needs
The SCI in Sweden PSP will carry out four qualitative workshops to gather needs and matters of importance from PLEx, their relatives, carers and health professionals working with PLEx in Sweden. The workshops will be led by an external professional workshop leader. Information specialist Jeanette Melin, who has experience of qualitative research, will be present to observe and compile data.
The SCI in Sweden PSP recognises that newly injured PLEx, children living with SCI or living with PLEx or PLEx living in rural areas may require additional consideration.
The PSP will use the organisations of the PLEx and health professionals’ magazines, websites, e-newsletters and social media to reach the target groups. The PSP will also reach the target groups through brochures and posters in areas the target groups visit e.g. hospitals and activity centres.
The workshops will produce ‘raw’ questions and comments indicating the areas of needs and matters of importance. These raw questions and comments will be categorised into themes by the information specialists.
The identified themes will inform the development of the quantitative, electronic survey that will be sent out to a wide range of stakeholders. The survey will not be limited to the defined themes but contain open questions so that the possibility to find needs and matters of interest in areas not identified at the workshops remains open. The expert group identifies possible networks for dissemination of the survey. It is desirable to reach out to as many people as possible and still maintain balance among the stakeholders.
Step 4: Refining needs and matters of interest and identifying uncertainties
The survey process will produce more ‘raw’ questions and comments indicating the areas of uncertainty. These raw questions and comments will be categorised and refined by the information specialists into summary questions which are clear, addressable by research and educators, and understandable to all. Similar or duplicate questions and comments will be combined where appropriate. Out-of-scope submissions will be compiled separately. The Expert 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 Expert Group will also consider how it will deal with submitted questions and comments that are out of scope. The JLA Adviser will observe to ensure accountability and transparency.
This will result in one or more list(s) for identified themes of in-scope summary questions. These are not research questions. They will be framed as questions that capture the themes and topics that people have suggested. The summary questions will then be checked against evidence to determine whether they are uncertainties i.e. have already been answered by research or not. Existing sources of needs and matters of interest may also be searched e.g. national and international PLEx organisations, national and international organisations of health professionals, recommendations in systematic reviews and clinical guidelines, protocols for systematic reviews and registries. This will result in one list of uncertainties and one list of evidence certainties, or ‘knowledge’, which have not (yet) reached or transferred to the target groups.
The data will 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 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 and evidence certainties. This will involve input from PLEx, their relatives, carers and health professionals working with PLEx in Sweden. There are two stages of prioritisation.
1. Interim prioritisation is the stage where the list(s) of questions, categorised into themes, is reduced to one, or more, shorter list(s) that can be taken to the final priority setting workshop. The most highly ranked questions of each list (up to 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 Expert Group will decide which questions are taken forwards to the final prioritisation.
2. The final priority setting stage is a one-day workshop facilitated by the JLA. With guidance from the JLA and input from the Expert Group, up to 30 PLEx, their relatives, carers and health professionals working with PLEx in Sweden will be recruited to determine the top 10 questions for research and education in each theme. All participants will declare their interests. The Expert Group will advise on any adaptations needed to ensure that the process is inclusive and accessible.
Dissemination of results
The Expert Group will identify audiences with which it wants to engage when disseminating the results of the priority setting process, such as researchers, funders, educators and communities of PLEx, their relatives, carers and health professionals working with PLEx in Sweden. They will need to determine how best to communicate the results and who will take responsibility for this.
It should be noted that the priorities are not worded as research questions. The Expert Group will 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 Gothenburg Competence Centre for SCI.
The Gothenburg Competence Centre will also use the results to formulate a strategy for their long-term business direction and distinguish the needs that are met by
- Education and information spreading (knowledge already exists)
- Research and development projects (lack of knowledge).
The PSP will report back to JLA about any activities that have come about because of the PSP, including funded research.
Agreement of the Expert Group
The SCI in Sweden PSP Expert Group agreed the content and direction of this Protocol on 25-26 November 2020.