Collaboration in pre-hospital care research: the pan asian resuscitation outcomes study

Constitution

The PAROS Clinical Research Network adopted a constitution with an Executive Committee at its inception in 2010, comprising a chairman, three co-chairmen and two nominated representatives per participating country to allow representation of issues unique to each country and to facilitate implementation. The Executive Committee is elected for a three-year term. The Network is currently chaired by Assoc. Prof Marcus Ong from Singapore, and co-chaired by Assoc. Prof Sang Do Shin from South Korea, Prof Hideharu Tanaka from Japan, and Assoc. Prof Matthew Ma from Taiwan. The Chairman and three Co-Chairmen also hold the executive authority for conflict resolution should potential conflicts arise within the Network.

Today, the PAROS CRN has now grown into a consortium of eight participating countries–Japan, Korea, Malaysia, Singapore, Taiwan, Thailand, Turkey, and United Arab Emirates (Figure 1). The characteristics of the participating regions and countries are found in Table 1. The eight participating countries present a potential patient population of 83 million—a huge population base useful for the characterization of populations and population-based studies. This systemic diversity can help to deepen the understanding of issues and systems in pre-hospital and emergency care on both local and international levels.

Publications committees

The Network views publications as an integral part of sharing the research findings, whether from the research done within the Network, or with other research groups within the research community. With this in mind, four publications committees were formed within the Network to introduce an in-built peer-review system and to instil a pro-research environment for budding research ideas. The four committees are organized by themes—OHCA, EMS Systems, Emergency Department (ED) Survey, EMS Survey.

At least twice a year, members can propose new study proposals which will be evaluated by the Publications Committees. This provides room for individual research ideas to bloom and an avenue for constructive feedback to be exchanged. The further organization of Publications Committees members into writing groups also help to create momentum and leverage on members with stronger language capabilities. To date, the Network has approved 16 studies ranging from termination of resuscitation, training, performance indicators, compliance of therapies, to secondary analyses of the PAROS registry. A table of the approved studies currently in progress can be found in Table 2.

Harmonized database and data capture systems

To measure the outcomes in a meaningful way and for comparisons across countries or regions, the PAROS Clinical Research Network developed a harmonized data dictionary based on the Utstein Style Template (Cummins et al, 1991; Jacobs et al, 2004). The list of variables, categorized as core and non-core determined by consensus, can be found in Table 3. Only countries that have given their commitment to contribute at least data of the core data variables can be considered a PAROS participating country. From October 2010, new countries interested in participating must also demonstrate to the PAROS Executive Committee their ability to meet this minimum criterion. A single data collection form based on the harmonized definitions was also designed to use in all participating countries. Where data was collected in a non-English language, participating countries perform back-translation to replicate the form in their own language, or have members versed in both languages transcribe and validate the data provided. In order for the collected data to eventually have population-based applications, country representatives on the PAROS Executive Committee work with their respective hospitals and agencies in EMS to include all OHCA cases conveyed by EMS or presenting at emergency departments.

To cater to the needs of participating regions or countries with and without existing data capture systems, two methods of capturing data were used—direct entry online via an online data capture system called ePAROS, or an export field entry which allows exported data from existing databases to auto-populate the registry. ePAROS is a user-friendly data capture system adapted from CARES. Access to this electronic mode of data collection is offered at no cost to the data personnel of the participating countries—allowing data to be collected in a cost-effective manner in limited resourced environments. Where export field entry is used, iterative rounds of data matching, clarifications on the provided data, and alignment with the PAROS data dictionary is carried out with the epidemiologist based at the Trial Coordinating Centre before any data is migrated to the ePAROS registry. The list of regions employing the two different methods is shown in Table 4.

Systemic compatibilities with the CARES system also allows for potential cross-continent comparisons that will bring exciting possibilities for exchange of ideas to improve survival.

Data quality assurance framework

Although united by good faith and trust, the Network is conscious that such intangibles though laying the foundation for research collaboration are, in themselves, inadequate to rigorously ensure accuracy and completeness of the contributed data. To ensure that data integrity is maintained in the data contributed by each participating country or region, a data quality assurance plan was developed for the registry. The document details the roles and responsibilities of the parties involved in the process, procedures for quality checks to ensure accuracy and completeness of data, and the recommended timelines applicable. The implementation of this framework endeavors to establish an accountability framework and a transparent approach to the expectations and the recommended corrective actions.

Data use framework

Recognizing the sensitivities surrounding the use of identifiable data, the use of identifiable data is restricted to the linking of data belonging to a single case. All unique patient identifiers will be permanently removed from the PAROS registry before use so as to protect the confidentiality and privacy of the subjects. Only study sites will maintain separate study logs that will enable tracing of individual case hospital outcomes and allow verification of data as needed.

Data drawn from the PAROS Clinical Research Network can only be used after written approval from the PAROS Publications Committees and the request should come in the form of a research proposal with the involvement of at least one member. This ensures that any data released for research have been evaluated scientifically, and limited to the approved use and the minimum necessary.

Funding model

The PAROS Clinical Research Network uses a low-cost, self-funded funding model. Each participating country is responsible for administering its own data collection process. Data for the registry are input via secured channels to an internet-based electronic data capture system hosted by the Trial Coordinating Centre located at the Singapore Clinical Research Institute in Singapore. The Trial Coordinating Centre is supported by grants from the Singapore Clinical Research Institute, Singapore Health Services, and the National Medical Research Council (Singapore).

Trial Coordinating Centre – Singapore Clinical Research Institute

As the Trial Coordinating Centre for PAROS Clinical Research Network, the Singapore Clinical Research Institute (SCRI) hosts the ePAROS, functions as the custodian of data for PAROS Clinical Research Network, and works closely with the Network on issues ranging from developing enabling frameworks, guidelines, bulletins, organization of investigators meetings and relevant educational events, maintenance of website, to the provision of epidemiological and statistical support. As an academic research organization dedicated to enhancing the standards of human clinical research, it fosters multi-institutional research by supporting and utilizing frameworks and platforms established to develop the people, processes, and systems needed to effectively execute this common goal.

Affiliations

The PAROS Clinical Research Network is affiliated to the Asian EMS Council, an advocate for pre-hospital care and EMS in Asia that focuses on creating opportunities for education and training. Both the Network and the Asian EMS Council are affiliated to the Asian Relations Ad Hoc Committee of the National Association of EMS Physicians (NAEMSP). PAROS CRN has also forged ties with the CARES, a research initiative based in Atlanta, USA, showcasing collaboration with parties beyond the region.

Education and communications

As a young Network, the PAROS Clinical Research Network is committed to building up the research capabilities of its members. Besides working with the Asian EMS Council for educational events that increase the understanding of the varying prehospital systems in the region, the Network also independently organizes workshops centred on literature review and manuscript-writing. This combination helps members broaden their horizons and gain appreciation of the different systems, and foster an environment conducive for intellectual exchanges and for research ideas to be shared and implemented beyond local settings. The organization of investigators meetings are often suitably held in conjunction with a regional or international educational conference. Timing meetings with such conferences also help to encourage participation in face-to-face exchanges—a boon to strengthening ties within the Network, which in turn drives progress.

As a means to engage members, the Network also issues a bulletin at least once every six months to keep members updated on the activities of the Network, and disseminate new information pertaining to the registry or studies conducted under the auspices of the Network. Every investigators meeting, held at least twice a year, also functions as an opportune time for members to update on progress to date, upcoming activities and plans, and reiterate or review timelines when necessary.