The concept of community is a powerful force in achieving shared goals and outcomes. The success of community projects hinges on key factors such as mutual support, cooperation and trust. Above all, success is dependent on individuals uniting to pursue and achieve common goals.

20 years ago, a group of like-minded researchers embraced the cohesive spirit of community to address a gap they saw in health and human services projects. They pooled their resources and knowledge, bringing clarity and direction to projects facing unclear ethics risks. The result - an impactful program that has been helping guide projects ever since.

Protecting people and their privacy

ARECCI, which stands for A pRoject Ethics Community Consensus Initiative, is a collaborative creation of Alberta Innovates and the human and health services community. Research projects require ethical oversight conducted through Research Ethics Boards (REBs), but the path is not as clear for quality improvement and evaluation projects in health and human services.

The ARECCI program addresses this gap by providing training, tools and guidance to minimize and mitigate ethics risks. ARECCI has gained national and international recognition for its consideration of ethics risks of individuals and their information and for improving project design.

“There was inconsistency in determining how and which projects should be reviewed by the REBs,” explains Robin Lau, senior business partner, ARECCI. “With no consistency or framework, there was concern that projects might slip through without proper approval and investigators might, consciously or unconsciously, cast their study as quality improvement to bypass the REB process.

How it works

ARECCI consulted with organizations around the world to develop its guiding policies, which led to the creation of exclusive decision support tools and an educational course on project ethics. Both tools are available online and support the ARECCI Second Opinion Review (SOR) process.

The ARECCI Screening Tool and Guidance document helps determine the level of risk of health and human service projects. Those with minimal risk can use ARECCI’s digital tools to better identify and manage those risks. Alberta-based projects can request a SOR through ARECCI’s volunteer reviewers if the risk is somewhat higher.

Volunteers are the key

Birgitta Larsson has been a credentialed evaluator for more than 30 years. An adjunct professor at the University of Alberta and owner of BIM Larsson & Associates, she uses ARECCI’s tools to help her clients ensure they are protecting and respecting individuals when conducting evaluation projects. Additionally, Birgitta provides SORs, facilitates ARECCI’s project ethics course, and is part of its network.

“As evaluators we are really well trained in rigorous methodology, but you have to balance rigorous methodology with doing the right thing and considering the context,” she explains. “I really believe in ethical practice. Individuals doing research become very focused on the Tri-Council standards and approaches but project ethics is a much more responsive, ethical way of approaching projects in community-based settings—and it works.”

But what about those projects that pose a high level of risk to people or information? ARECCI established a working group in 2022 which has since provided a framework for an Organized Recognized Review (ORR), the highest level of systematic ethical review for projects not subject to REB approval.

The framework helps organizations improve training and education in ethically designed projects, which in turn may lead to cost and time savings. It also gives organizations and investigators the opportunity to learn from the larger ARECCI community.

“People value ARECCI because it provides a community of practice, process, tools, techniques,” says Robin. “It also provides a framework for ensuring projects are implemented with patients at the centre of care.”

Moving forward

As it enters its third decade, ARECCI isn’t slowing down. Its community remains strong through a network of reviewers, with the decision support tool applied to over 2500 projects worldwide in 2023. The program is actively exploring ways to enhance its SOR process and training while building new partnerships with key stakeholders. Additionally, it supports organizations in building their capacity for further ethics review.

Birgitta hopes that more organizations will encourage investigators to use ARECCI’s resources. “The ARECCI tools are a smooth, simple way of screening your project to figure out where project risks lie and determining the best way forward,” she says.

For more information

The decision support tool, guidance, second opinion review and training opportunities are located on the ARECCI webpage.

ARECCI Ethics Guidelines and Screening Tools

A pRoject Ethics Community Consensus Initiative (ARECCI) program helps address and mitigate ethical risks through decision support tools, training opportunities and project ethics consultation.

View the ARECCI page