Howdy! My name is Ann Gillard and I’m the director of research and evaluation at The Hole in the Wall Gang Camp in Connecticut, which serves children with serious illnesses and their families through outreach, hospital, and camp-based programs. In an organization-wide effort to highlight risk management of our programs, I didn’t want my research and evaluation department to be left out. So, I created this document: Risk Management of Research and Evaluation at The Hole in the Wall Gang Camp.
For inspiration, I looked online for examples of ethical principles of medicine, such as here, and of health information, such as here, and also checked out AEA’s IRB- and ethics-related resources. Next I considered the risks associated with the types of research and evaluation projects we do, which are typically surveys, interviews, and observations. I also considered projects that we do in-house and those for which we collaborate with a university and use their IRB. Finally, I considered the potential for risks and for the possible outcomes, given our population and setting.
As you can see in the chart Risk Management of Research and Evaluation at The Hole in the Wall Gang Camp, the main principles that our research and evaluation will promote include beneficence and nonmaleficence, autonomy, justice, and confidentiality. The risks associated with these principles include:
- Emotional, mental, physical harm
- Uninformed participation
- Bias in selecting study participants
- Insensitivity to vulnerable populations
- Loss of privacy
I then considered the probability of occurrence and the magnitude of the harm that could come from the occurrence. Finally, I included several steps for each risk that would manage the risks.
A few additional steps to manage risks didn’t seem to fit into any categories, or transcended multiple categories:
- Work with an outside institutional review board (IRB)
- Review projects with Board and upper management
- Engage in review process for adverse events
The process of contemplating risk management in the context of research and evaluation in a nonprofit organization raised my colleagues’ awareness of what I do, and the ethics involved. I also gained greater clarity of the risks involved in my work and am glad to have a resource to refer to when designing new projects.
- American Evaluation Association Guiding Principles for Evaluators
- Using electronic case records for evaluation in social service agencies Part I by Aaron Gunning and Laura Beals
- Eun Kyeng Baek and SeriaShia Chatters on the risks in internal evaluation
- CASNET Week: Frances Lawrenz and Amy Grack Nelson on what to do when IRB approvals differ
- Dana Harley on tips for utilizing photovoice with children and adolescents: Navigating the institutional review board
- Judy Savageau on the IRB process in human subject research
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