The purpose of the provocation cards is to start discussions between the team members on ethical concerns or issues arising from working with potentially vulnerable groups of participants. The selected provocation cards may make team members think about the research context more broadly and/or align new members with the thinking and values of the existing team. Think about them as “wild cards” in games.
Pick up a card and discuss it with your team at any point of the research programme. Try and find some common ground in the situations described in the cards. What would you do? How would you tackle the issue?
The cards are divided in four categories:
- Technology
- Sense of Self
- Relationship between researchers and participants
- Relationships between family members
If you find that your team is quite technology minded, you might want to choose a different section of the pack to challenge thinking.
Somebody steals data from prototypes.
What do you do?
you have permission to use somebody's data after his death.
how long should you keep it?
You have been given permission to use data for a year but you still need the data.
What do you do?
You use open source software to make a new prototype. after the project somebody asks to buy the idea.
Can you sell it?
a participant has access to her deceased daughter's private accounts.
should you use the data?
a prototype is helping a family with the grieving process but they accidentally break it?
What should you do next?
a participant shares a private post with you.
can you use it in the research?
you have really useful data from an old project.
could you use it in a new project?
a participant doesn't recognise photos from his own childhood.
what do you say?
a participant doesn't think they have dementia but she has been diagnosed with it.
would you involve them in a dementia study?
You are working with participants to make meaningful objects that might help other people in the future.
who owns the ideas?
a participant is asking you to use living tissue from one of the objects.
what would you do?
Participation in research is harming the participant's health but she still wants to take part in the research.
what do you do?
a participant is going to commit a crime.
what would you do?
a participant asks you for advice about her medication.
what would you say?
you became very friendly with the people you work with.
would that be ok?
a participant doesn't want to continue taking part in the research but she wants to continue having informal meetings with the researcher.
what would you do?
a participant's life expectancy is much shorter than the project, would you involve them in the research if they want to take part?
at the end of the research, some of the participants asked to keep the objects that were made for them.
what would you do?
your colleagues said that you are getting too close to your participants.
what would you do next?
how would you keep in contact with somebody who is bereaved?
a participant is asking you to help them die.
what should you say?
the family of the participants would like to share some photos but the participant doesn't want them to be shared.
what do you do?
bereaved mother found her daughter's diary and she wants to use parts of it within the research.
what do you do?
a participant's wish is to be remembered after his death and he asked the researcher to keep his data forever.
should you agree?
a participant with dementia doesn't remember why he is part of a research process.
what do keep reminding them?
a participant has a terminal illness and she is asking you to make an object that will save her.
what do you do?
two family members dislike each other but want to be part of the same workshop.
what would you do?
not all of the family wants to participate in the research.
what do you do?
a participant wants you to help him contact his dead relative.
what would you do?
The prompt cards work well with the value cards and when discussing what we can and cannot do within a research project. We’ve enclosed another one of these worksheets to help capture discussions.
As you are facilitating the activities, it’s important that another team member is in charge of capturing the discussions and decisions. For the provocation activities we have enclosed 1 worksheet to help in capturing an overview that can be referred to throughout your project:
- We can / we cannot
