Priority Setting Partnership for Sudden Cardiac Arrest
Primary Investigator:
Katie N. Dainty, PhD
Research Chair, Patient-Centred Outcomes
North York General Hospital/University of Toronto
Toronto, ON
Co-Investigators:
Andreas Laupacis, MD, MSc
Executive Director, Li Ka Shing Knowledge Institute
St. Michael’s Hospital
Toronto, ON
Bianca Seaton, PhD(c)
Research Coordinator III
North York General Hospital
Toronto, ON
In collaboration with the James Lind Alliance (UK)
Lay Abstract
In this study, we are going to use the James Lind Alliance (JLA) patient engagement methodology to work with sudden cardiac arrest survivors and their family members, lay rescuers, and health care providers to set priorities for sudden cardiac arrest research conducted in Canada. Our goal is to develop a “top ten” list of research priorities that reflect the needs and interests of all stakeholder groups. We will then share this list of research priorities with other researchers and research funding bodies in Canada and internationally so that these priorities will be considered when undertaking research projects on sudden cardiac arrest in the future.
Purpose
The purpose of this protocol is to set out the aims, objectives and commitments of the Priority Setting Partnership (PSP) for Sudden Cardiac Arrest Research and the basic roles and responsibilities of the partners.
Background to the PSP for Sudden Cardiac Arrest
Sudden cardiac arrest is defined as a sudden stop in effective blood circulation due to the failure of the heart to contract effectively or at all, therefore impeding oxygen delivery to the body and brain [1]. Out-of-hospital cardiac arrest (OHCA) is a significant cause of death worldwide [2] and in Canada, where approximately 40,000 occur each year or one every 13 minutes [3]. Although past research efforts have nearly doubled survival rates for OHCA victims, the current average rate remains very low at approximately 10% [4, 5], so we still have much work to do in the field of resuscitation research.
In 2015, the Canadian Institutes of Health Research (CIHR) and the Heart & Stroke Foundation of Canada (HSFC) strongly confirmed their commitment to resuscitation research and citizen engagement in Canada by funding the Canadian Resuscitation Outcomes Consortium ($3,000,000 over 5 years). CanROC is a pan-Canadian resuscitation research network – the largest of its kind in the world – aimed at a collaborative approach to research to improve survival from life threatening illness and injury.
For CanROC, the word “public” is used to represent the collective communities of survivors, families, bystanders and public who have an interest in improving survival from sudden cardiac arrest. We know that public engagement in CanROC research will improve the relevance of the trials and studies we do and improve their translation into every day practice, contribute to more effective health services and products, and ultimately, improve the quality of life for those that suffer cardiac arrest & trauma. Underpinning this approach are guiding principles to which all CanROC partners have agreed to adhere to in pursuing the goal of full integration of public partners into our research and governance. These include full support for public partnerships at all tables, embracing diversity and mutual respect at all stages of our research, and priority setting endeavours.
Understanding how to build a longitudinal, coordinated and effective way to engage patients & families in Canadian resuscitation research will provide immense value to the overall health of the nation but requires an initial bold step. Building on the public engagement infrastructure that CanROC has put in place and to create meaningful engagement opportunities for our patients and public partners, we feel it is important to take this step and engage our community in identifying research priorities from all perspectives, in particular examining where our priorities converge and diverge so that we can build a robust research agenda that speaks to everyone impacted by sudden cardiac arrest.
This protocol is based upon the approach successfully used in the UK by the James Lind Alliance (JLA) involving patients, their caregivers and clinicians in research priority setting (www.jla.nihr.ac.uk/).
Research priorities for this initiative will be identified through five key steps: identification and invitation of potential partners, initial stakeholder meeting by teleconference, collection of research questions, refinement of research questions, and prioritisation (interim and final stages). The steps are outlined in greater detail below.
Aims and objectives of the PSP
The aim of the PSP for Sudden Cardiac Arrest Research is to identify the unanswered research questions regarding the pre-hospital, in-hospital, and post-discharge care (both clinical and psycho-social) of adult survivors of sudden cardiac arrest from the perspective of survivors of cardiac arrest and their family members as well as lay rescuers and health care providers involved in their care, and then prioritise the research questions which survivors, family members, and health care providers agree are the most important.
The objectives of this PSP are:
- To work with survivors, family members, lay rescuers, and health care providers to identify unanswered research questions, emerging issues, and priorities for research regarding the care of adult survivors of sudden cardiac arrest, including treatment uncertainties, rehabilitation, and survivorship
- To agree by consensus on a prioritised ‘top ten’ list of priorities for research that reflect the needs of all stakeholder groups
- To publicise the results of the PSP and the process
- To share the results with the CanROC network, the International Liaison Committee on Resuscitation (ILCOR), the Canadian Institutes of Health Research and Heart & Stroke Foundation (the main funding bodies for resuscitation research), and other researchers so that these priorities will be considered when undertaking research projects in the future
Partners
Individuals and organizations representing the following groups will be invited to take part in the PSP:
- Survivors of sudden cardiac arrest.
- Family members of people who have experienced sudden cardiac arrest.
- Lay rescuers of people who have experienced sudden cardiac arrest.
- Health care providers involved in the care of sudden cardiac arrest patients, including: physicians, nurses, EMS personnel.
- Resuscitation researchers.
Individuals and organizations wishing to participate in the PSP will be required to demonstrate their commitment to the aims and values of the process. The underlying principles of the project are: transparency of process, balanced inclusion of survivor, family member, and health care provider interests and perspectives, exclusion of non-clinician researchers for voting purposes (but they may be involved in other aspects of the process), exclusion of groups/organizations that have significant competing interests (e.g. pharmaceutical companies and device manufacturers), an audit trail of the original submitted uncertainties to the final prioritized list, and recognition that making priority decisions does not create new knowledge, but reviews existing evidence of uncertainty. Details about the commitment procedure can be found at: www.jla.nihr.ac.uk.
Methods
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 in the JLA Guidebook at: http://www.jla.nihr.ac.uk/jla-guidebook/.
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 include the Canadian Resuscitation Outcomes consortium, the Heart & Stroke Foundation of Canada, the Bystander Support Network, and the Sudden Cardiac Arrest Foundation. Potential partners will be contacted and informed of the establishment and aims of the PSP for Sudden Cardiac Arrest Research and invited to participate.
Step 2: Initial stakeholder meeting via teleconference
An initial stakeholder meeting will be held via teleconference with the Steering Committee and representatives of the partners mentioned above. This meeting will have several key objectives:
- to welcome and introduce potential members of the PSP
- to present the proposed plan for the PSP
- to initiate discussion, answer questions and address concerns
- to identify additional potential partner organisations which will commit to the PSP and identify individuals who will be those organisations’ representatives and the PSP’s principal contacts
- to establish principles upon which an open, inclusive and transparent mechanism can be created for contributing to, reporting and recording the work and progress of the PSP.
The administrative process for convening this meeting will be managed by Katie Dainty from North York General Hospital and Andreas Laupacis from St. Michael’s Hospital, Toronto.
Following the meeting, individuals and organisations that have decided to participate in the PSP will be asked to complete a declaration of interests, including disclosing relationships with the pharmaceutical industries.
Step 3: Identifying research questions
An initial online survey will be developed for collecting feedback on research questions from our stakeholder groups. Part A of the questionnaire will include demographic data on the survey participants and Part B will be one key question: ‘What question(s) would you like researchers to answer that will help improve the treatment, care, rehabilitation, and experience of survivorship of victims of cardiac arrest, their families, or inform the training of lay rescuers?’ Additional prompts regarding broad potential domains may also be included in order to focus the responses. Participants will be encouraged to keep questions concise and will be advised that there is no limit to the number of questions to pose.
The background information (to be included in the survey form) as well as the wording of the survey items will be designed to be clear and easy to understand by all participants. In addition, the following identifiable demographic data will be requested in the survey: age, gender, marital status, geographic location, years since arrest, health status, ethnic group, and whether the participant is a survivor, family member, lay rescuer, health care provider, researcher, or a member of a partner organization. These data will be collected in an effort to determine whether the perspectives of our stakeholder groups of interest have been successfully captured, and to study whether research priorities are influenced by these demographic factors.
We will leverage the CanROC Public Engagement strategy to develop a pool of diverse participants from across Canada. Each CanROC site (10 in total) has developed a local network of survivors, family members and lay rescuers who will be asked to participate. We will also reach out to the Heart & Stroke Foundation of Canada, the Bystander Support Network and the Sudden Cardiac Arrest Foundation through various connections in order to access their networks as well.
The main method for delivery of this survey will be a web-based survey tool such as SurveyMonkey.com or equivalent. Participants may complete the survey anonymously. We will also leverage social media tools such as Twitter and Facebook to elicit feedback from survivors, families, lay rescuers, and health care providers who may not be connected to other networks but may feel more comfortable responding indirectly via social media.
A period of 3 months will be given to complete this exercise.
In addition, a highly experienced Information Specialist from St. Michael’s Health Sciences Library will search existing sources of information about research questions for survivors, family members, lay rescuers, and health care providers. These can include research recommendations in systematic reviews and clinical guidelines; protocols for systematic reviews being prepared, and registers of ongoing research. In the past JLA projects, between 100 and 1000 potential research priorities have been identified at this stage.
Step 4: Refining questions and uncertainties
The consultation process will produce “raw” unanswered research questions about the treatment, care, rehabilitation, and experience of survivorship of victims of cardiac arrest. These raw questions will be assembled, categorised, and refined by the Steering Group in collaboration with the Information Specialist into questions which are clear, addressable by research and understandable to all. Similar or duplicate questions will be combined where appropriate. The existing literature; particularly clinical practice guidelines and systematic reviews, will be researched by the Information Specialist to see to what extent these refined questions have, or have not, been answered by previous research.
The steps we will take are as follows:
- Removing responses that are not specifically concerned with cardiac arrest or trauma, or that were not researchable questions.
- Grouping questions into categories so that questions addressing similar topics and aspects were grouped together and eliminating duplicates.
- Converting, where possible, responses to Patient, Intervention, Comparison and Outcome (PICO) format.
- The Information Specialist will systematically search the published literature (using the Medline database, PubMed interface and Cochrane database) for existing systematic reviews and randomized controlled trials published within the past 10 years that adequately answer the research question and remove these from the data. Literature showing either conflicting results on the effects of interventions or substantial methodological shortcomings will be deemed inconclusive and left in.
- Develop the ‘long list' of research questions known as ‘uncertainties’.
Sometimes, uncertainties are expressed that can in fact be resolved with reference to existing research evidence (for example studies have been done, but a systematic review of all of the studies has not yet been done). These uncertainties will be categorized separately from the 'true uncertainties', where new research is needed.
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 regarding the pre-hospital, in-hospital, and post-discharge care (both clinical and psycho-social) of adult survivors of sudden cardiac arrest from the perspective of survivors of cardiac arrest and their family members as well as lay rescuers and health care providers involved in their care. This will be carried out by members of the Steering Group and the wider partnership that represents survivors and their families, lay rescuers, health care providers, and researchers.
An online interim survey with the long list of uncertainties will then be conducted in early 2019. Similar to Stage 3 (identifying research questions), this interim survey will be distributed to a broad group of stakeholders. The wording of the list of uncertainties may be altered in some cases to make the question more understandable and glossary terms will be added to explain complex words that may not be generally well known to the public. Uncertainties will be presented in themes and presented in alphabetical order to avoid bias. Survey participants will be asked to vote on how they would prioritize research for each uncertainty on a scale of 1 to 5 (1 being a relatively low priority, 5 being a very high priority).
Results of this prioritization stage will be reviewed by the Steering Group, and uncertainties will be ranked in the order of priority following non-weighted, frequency-based statistical analysis.
Based on the ranked results from the interim survey, the top 25-30 uncertainties will be taken forward for discussion and further prioritization into a ‘top ten’ list at a face-to-face meeting/workshop at the CanROC Annual Assembly in May 2019. A group of selected representatives from all stakeholder groups will be invited to the workshop, including survivors, families, health care providers (including Emergency Physicians, Cardiologists, nurses, family doctors), EMS personnel and researchers. Approximately 20 participants in total will be recruited. The consensus meeting will be led by an experienced and independent facilitator, Dr. Andreas Laupacis, who has used the JLA Nominal Group Technique, with a combination of small and full group discussion, in more than ten PSPs, to ensure that everyone has an equal opportunity to share his or her perspective, and discussions finish within the allocated time.
All participants will be sent the short list of 25-30 uncertainties in advance of the workshop and asked to individually reflect on the research questions, to write down any comments and to rank these questions in order of priority. Participants will also receive detailed information about the process by which the uncertainties were generated. This will enable participants to be familiar with the uncertainties for discussion at the workshop and to ensure that everyone has something to contribute in the first small-group discussion.
Findings and impact
By actively engaging our public partners in the priority-setting process for sudden cardiac arrest research in Canada and completion of a ‘top ten’ list of research priorities that reflect the needs of all stakeholder groups, we hope to see following impacts of our work:
- A prioritized research agenda that helps ensure the most relevant research evidence gets created and moved into practice, enhancing the health care experience for patients and improving health outcomes for Canadians; in particular increasing the rate of survival from cardiac arrest and improving the experience of survivorship
- Economic benefits by prioritizing and optimizing the projects we develop for funding applications to be those supported by a co-designed research agenda and attracting private investments in evaluative research that is important to patients and families;
- Including perspectives on where we need innovation in patient-centred care such as areas like e-health, transitions in care and system level communication;
- More clinical research by improving the capacity for various levels of clinical and observational research in Canada; and
- Collaboration among provinces and territories by providing jurisdictions with opportunities to learn from each other, and from patients and families across Canada, to the benefit of all Canadians.
It is anticipated that the findings of the PSP for Sudden Cardiac Arrest Research will be reported to funding and research agenda setting organisations such as the CanROC network, ILCOR, the Canadian Institutes of Health Research, the Heart and Stroke Foundation of Canada, and the Sudden Cardiac Arrest Foundation. The findings will also be distributed through scientific meetings, web sites and social media.
There are currently no academic offerings regarding patient and public engagement in sudden cardiac arrest research within the international literature. We anticipate being able to contribute a minimum of 3 peer-reviewed publications from this work including those reporting the prioritized ‘top ten’ list as well as methodological contributions regarding the use of the JLA methodology in the field of resuscitation science.
Timelines
July 2018 - August 2018 - Identify partners, form Steering Group
September 2018 - November 2018 - Develop and distribute survey
December 2018 - February 2019 - Process identified research priorities, develop interim list, and distribute survey
March 2019 - May 2019 - Final priority setting consensus meeting and dissemination of research findings
References
- Jameson, J. N. St C.; Dennis L. Kasper; Harrison, Tinsley Randolph; Braunwald, Eugene; Fauci, Anthony S.; Hauser, Stephen L; Longo, Dan L. (2005). Harrison's principles of internal medicine. New York: McGraw-Hill Medical Publishing Division
- World Health Organization (2014). The top 10 causes of death. Media centre 2014.
- Heart and Stroke Foundation of Canada (2015). STATISTICS. http://www.heartandstroke.com/, Last accessed July 2015.
- Nichol G, Thomas E, Callaway CW, et al (2008) Resuscitation Outcomes Consortium Investigators. Regional variation in out-of-hospital cardiac arrest incidence and outcome. JAMA. 300(12):1423.
- Berdowski J, Berg RA, Tijssen JG, Koster RW (2010). Global incidences of out-of-hospital cardiac arrest and survival rates: systematic review of 67 prospective studies. Resuscitation. 81(11):1479-1487.