By: Amy Mahoney Harris & Mary Ann Wojton
How do I collect data from people without asking their names?
When evaluating programs, measuring outcomes at several points along a participant’s time in the program is sometimes the best way to show that the program made a measurable difference in the participant’s life. This requires identifying an individual’s responses on several different questionnaires. To maintain confidentiality, it is important to consider how you can identify a participant without using identifiable information, such as name, address, birthdate, phone number, email address, social security number, ID number, etc.
Many programs require participants to give identifying information, but for those that do not or for evaluations outside the case management system, each participant needs a unique identifier that they can remember that does not use any identifying information.
What makes a strong identifier?
– Is unique because it does not include a component that many participants would share, such as zip code
– Does not include components that change, such as age
– Is not too complicated to remember
– Is long enough that you can add more participants without repeating IDs, so it can grow with your program
– Includes at least two components that are different, such as a part of the social security number and birth month
– Includes information the evaluator doesn’t have, allowing the individual to remain anonymous
How do I encourage program attendees to fill out surveys?
For programs struggling to improve the response rate and completion rate of participant surveys, we talked to Ken Musgrove at Community in Crisis (CiC) for some insight. CiC initially faced resistance when they introduced evaluation surveys into their recovery programs after many years of only providing peer support meetings where no data was collected. CiC has found higher response rates when there is time for participants to fill out the questionnaire during the program, rather than sending participants home with a link or sending a follow-up email. Even in the woods during wilderness retreats, Musgrove has used QR codes to send surveys to participants’ phones.
Musgrove freely admits that he is still learning how to best collect data, but in his experience, communication about why the data is collected and how it will be used is key. Musgrove explains, “At every event we do, we do a 2 to 5-minute spiel on what we do. And part of that is [explaining that] you will be receiving a survey and we’d like you to fill it out. The reason why we’re asking for this information is that we provide these events for free, and the grantors want to make sure that we’re doing what they’ve asked us to do.”
What should I consider when thinking about data privacy?
Data privacy is an important value in society, but for people in recovery from substance use disorder who experience the stigma often associated with substance use disorder, data privacy can be paramount.
Data privacy should be a consideration at every stage of the evaluation process. Within your team, put systems in place that ensure data security. If your agency collects data, a staff member should be well-trained in data management practices and handling confidential information. That person should be clear on who gets access to what data and when that is appropriate. Data systems should be password protected and highly secure to prevent a data breach.
Before data collection, confidentiality should be clearly explained to participants. This includes how the information will be used once data analysis is complete. Don’t forget to share the results with the participants in your data dissemination plan. Share the results with participants in plain language and use appropriate media, for example an infographic, a short presentation given at a community meeting, or a full report published online. Trust is built when participants see how their information is presented and the purpose it has for the agency.