Purpose of the Myeloma PSP and background
The purpose of this protocol is to set out the aims, objectives and commitments of the Myeloma Priority Setting Partnership (PSP) and the basic roles and responsibilities of the partners therein.
Background to the Myeloma PSP
The Myeloma PSP is a Canadian project that is supported by Myeloma Canada, a charitable non-profit organization, in consultation with the James Lind Alliance (JLA). The National Institute for Health and Care Research (NIHR) funds the infrastructure of the JLA to oversee the processes for priority setting partnerships, based at the University of Southampton. The aim of this initiative is to provide an infrastructure and process where patients, caregivers and clinicians come together to agree which are the most important uncertainties affecting myeloma, in order to influence the prioritisation of future research in this area. The JLA defines an uncertainty as a “known unknown” and in the case of the Myeloma PSP relating to the diagnosis, treatment, management of and living well with myeloma.
Aims and objectives of the Myeloma PSP
The aim of the Myeloma PSP is to identify the unanswered questions about Myeloma from patient and clinical perspectives and then prioritise those that patients and clinicians agree are the most important.
The objectives of the Myeloma PSP are to:
- work with patients and clinicians to identify uncertainties about the diagnosis, treatment, management of myeloma and living well with myeloma.
- 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 Myeloma PSP will be led and managed by the following:
Patient/Caregiver Representatives:
- Susan Collins, person living with myeloma
- Lorelei Dalrymple, person living with myeloma
- Robin Sully, person living with myeloma
- Sharon Nason, caregiver of person living with myeloma
- Bill Paine, caregiver of person living with myeloma
- Trish MacDonald, caregiver of person living with myeloma
- Barbara Ridgway, caregiver of person living with myeloma
Clinical representatives:
- Dr. Kevin Song, haematologist with a strong interest in the treatment of myeloma and bone marrow transplants
- Suzanne Rowland, nurse practitioner with a focus on haematology and multiple myeloma in Toronto, ON at the Princess Margaret Hospital
- Dr. Donna Reece, oncologist on the Cancer Clinical Research Unit (CCRU) within the Princess Margaret Cancer Centre
The Partnership and the priority setting process will be supported and guided by:
- The James Lind Alliance (JLA)
- Patricia Ellis
- Dr. Tony Reiman, Myeloma PSP Lead
- Lauren Cook, Myeloma PSP Coordinator and Clinical Research Assistant with the Maritime SPOR SUPPORT Unit (MSSU)
- Samantha Fowler, Myeloma PSP Information Specialist and Clinical Research Assistant with the Maritime SPOR SUPPORT Unit (MSSU)
- Myeloma Canada
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.
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 scope of the Myeloma PSP. Partners represent the following groups:
- people who are living with myeloma and their caregivers
- medical doctors, nurses and professionals allied to medicine with clinical experience of myeloma
- professional & charitable organizations
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 Myeloma 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 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 and those of Myeloma Canada. Potential partners will be contacted and informed of the establishment and aims of the Myeloma PSP and invited to use their networks to promote participation in the survey.
Step 2: Initial stakeholder meeting / awareness raising
An in-person workshop was held with Myeloma PSP Steering Group members and additional partners on April 26th, 2019. Attendees identified potential partner organizations and individuals who will be those organizations’ representatives and the Myeloma PSP’s principal contact. A communication plan will be developed and implemented based on the identified partners. Additionally, methods & resources the partners require will be created by the steering group and the Myeloma PSP coordinator.
Step 3: Identifying treatment uncertainties
Each partner will identify a method for soliciting from its members questions and uncertainties of practical importance relating to the diagnosis, treatment, management of and living well with Myeloma.
The methods for reaching potential survey respondents may be designed according to the nature and membership of each organisation, but must be as transparent, inclusive and representative as practicable. As well as disseminating the survey link, methods may include membership meetings, email consultation, postal or web-based questionnaires, internet message boards and focus group work.
Existing sources of information about diagnosis, treatment, management of and living well with myeloma uncertainties for patients, caregivers and clinicians will be searched. These can include question-answering services for patients, caregivers 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.
Step 4: Refining questions and uncertainties
The Steering Group have agreed that Samantha Fowler, a Clinical Research Assistant with the Horizon Health Network, along with consulting resources will be responsible for this stage as the Myeloma PSP Information Specialist– 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, treatment, management of and living well with myeloma. These raw questions will be assembled and categorised and refined by Samantha Fowler and consulting resources 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 Samantha Fowler and consulting resources 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. For example, 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 Samantha Fowler. 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 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 relating to the diagnosis, treatment, management of and living well with Myeloma. 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.
- 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, Patricia Ellis. 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 Myeloma PSP will be reported to funding and research agenda setting organisations and the major research funding charities, including Myeloma Canada. 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 Myeloma 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, as well as French. 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
Acknowledgement of Consent
This protocol has been approved by the Myeloma PSP Steering Committee.