I sketched out the research process, focusing on how and when we ask for consent. Through doing this I realised collecting consent isn’t just about a signature on a form, it is a journey with a number of steps.
A section of my Collecting Informed Consent diagram, view the larger version
Making sure ‘Informed Consent’ is really ‘Informed’
Informed Consent is a term I discovered through working in the health sector. It’s not a term usually found in design research. Informed Consent means permission granted in full knowledge of the possible consequences. While our design research may not need the rigour of medical research, gaining official ethical approval per project for example, our consent process was a far cry from being ‘Informed’.
Using the World Health Organisation’s template I created an Informed Consent Form for us to use at IF. I particularly liked the tips and guidelines embedded in the WHO’s form, which includes guidance about when you should give participants this form and questions to ask to check they’ve understood.
I made sure the template I created had a ‘how to use’ section, to make sure researchers would know what interactions need to happen around the actual signing of the form. That includes things like:
- Send the information to participants in advance of research, so that they have time to read it through and prepare questions about things they are unsure about.
- Get researchers to ask participants questions to double check the participant has understood key parts of the research.
- Explain clearly or show examples in context of how the data will be stored, who will have access to it and when it will be removed from our system.
Decide how to record information carefully and clearly disclose this to participants
I’ve also been in contact with other designers and researchers to see how their consent process differs. The researchers conveyed how important it was to protect the privacy of their participants but their processes were quite different.
They talked about how important it is for participants to know how their information is managed. You should show participants how you discuss research with the rest of the team, censor out any identifying information like schools, post-codes etc. and blur out faces or names in films or audio recordings. Simply Secure also have some brilliant blog posts that look at respecting participants privacy. That helped me establish some high-level principles for research:
- If you’re going to record participants in any way during research you should make this clear to participants as part of gaining Informed Consent.
- Recording research sessions of participants with multiple methods increases the security risk to the participants as more data has been collected about them and they are more easily identifiable.
- For each method of recording, think carefully about whether it is absolutely necessary to do. Collect only the amount of information you need to effectively feed back to your design teams.
Example of an anonymous image taken while doing research.
Storing and labelling data needs to be secure and private
Ian and I paired up to decide how we’ll store and keep participants data as securely as possible in the future.
- Store signed Informed Consent Forms in a secure place under lock and key as it contains personal information. Refer to participants using a code system rather than using names, e.g. P01, P02, P03.
- Keep a key to the identity of the codes in a secure place also under lock and key.
- Keep raw data, transcripts, audiovisual files, in a separate place to processed data and preferably not on an online server. Store on an encrypted password protected hard drive, that is locked away at the end of each day.
- Delete any raw data after the project has finished.
Involving participants in research
There seems to be a lot of opportunities to improve our research process and design a more interactive and empowering experience for participants. I’ll be sharing some of our ideas in a follow up blog post. If your team have come up with any design research innovations, please do get in touch. I’d love to know more.