Designing Proof and Evidence: Co-Design Outcomes
For details of the co-design activities please see Designing Proof and Evidence: Co-Design Activities
For related resources please see Designing Proof and Evidence Resources
Summary of Actionable Outcomes
This complex challenge could not be fully addressed in three sessions and the group identified a need to create a working group going forward that might include partnerships with other organizations in order to leverage their access to various communities impacted by this issue. Another point of consensus for the group was that engagement of the community in determining what is most relevant in collection, analysis and disclosure of data is essential to meeting this challenge.
One approach explored by the group was the need to study relevant historical surveys and data, with the goal of releasing this data publicly in order to raise awareness. This approach could then be used to support the escalation of the issue through a media campaign. The group also identified the approach of engaging Independent experts, such as the UN Special Rapporteur on disability, as another way to escalate the issue and raise awareness.
Another approach identified by the group was the establishment of community controlled data and evidence governance. Important questions were raised in terms of who is controlling the data and the public message about that data, and who has access to data that already exists. This included identifying the need for self-governance over the creation of surveys and over the data that is collected. The example of the First Nations Information Governance Centre was shared, with a focus on using the OCAP (ownership, control, access, and possession) framework.
The group also identified the need to challenge assumptions in how research is done by following the 3 dimensions of inclusive design and employing other models such as OCAP and EGAP (Engagement, Governance, Access, and Protection).
Other steps were identified, including:
Developing a handbook of types of evidence
The creation of a knowledge commons, including
gaining access to peer-reviewed data by pooling resources, and
the ongoing de-scattering of “peerless” research, including research links, downloads and previous research
Engaging Statistics Canada to raise awareness and collaborate in developing an approach to producing valid proof
The following sections describe the detailed outcomes from each of the three co-design breakout groups.
Group 1 Journey Mapping
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Description – Group 1 Journey Map
What
Setting up a working group through partnership with other organizations.
Why
To set up overall strategy, so that we all move towards the same goal and achieve better results
How
Who will set up this group? We Count?
Will it have experts / people with living experience / government?
What tools to use?
Who
Experts (community-based and people with living experiences, and other knowledgeable people) who will be dedicating their time and effort.
Challenges
Finding and engaging experts. They would need to talk and discuss who else to engage.
Time is another important aspect to consider.
Also funding/money
Action 1: Sourcing relevant academic research/ journal articles. Provide access to trusted members.
Why
Not everyone has access to this information.
Who
People in the working groups can help to provide access
Challenges
Subscription services are paid. This is costly. Only larger companies/universities have access
How
Mentorship of scholars
Community engagement workshops, making information more accessible
Partnering with universities since they already have access
Making sure there are sharebacks from the group to larger community
Action 2: Study of past/historical surveys/studies. Release information and existing data publicly.
Why
Starting from scratch isn't always that easy, lot of work. How to not waste the work that has already occured
Keep institutional memory alive.
Who
Community organizations who have already collected data/surveys
Challenges
Information is not publicly available
Action 3: Looking at what is happening/Research
Why
Understanding the clear situation/ different aspects
Who
community members, combination of both, which people who hold power, teachers.
Getting to the right people who can be powerful allies
Challenges
Making sure there is safety for people who engage with government organization/ ministry etc
Action 4: Putting Disability related questions into the surveys
Why
Help to get data for the disability community to advance our agenda give us evidence that was lacking
Who
People who are responsible for the surveys
Challenges
Don't know if you could have access to that kind of information
Action 5: Scatterwall: Ongoing de-scattering research links, downloads and previous research
Who
Working group, CEOs in charge of the research that isn't released
Challenges
This research might not see the light of day and is lost
Action 6: Setting up public-use survey having/collecting own data having own surveys within the disability communities
Why
To ensure: timeliness, relevance, cost
Who
Survey experts in collaboration with people with lived experiences
Challenges
Expertise of survey designers, cost, who is in charge of running these surveys, time
Group 2 Journey Map
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What
Multiple lines of evidence should be accepted as valid.
Why
Because empirical standards foreclose on other forms of evidence, thinking and reasoning.
Action 1: Develop a handbook of types of evidence
Why
We need to examine the assumptions underlying our research methods
Why
There is a need to educate researchers and policy-makers on inclusive and community-driven approaches
How
Example – Human Rights Glossary:
https://bchumanrights.ca/wp-content/uploads/BCOHRC_Sept2020_Disaggregated-Data-Report_FINAL.pdf
Action 2: Address equity barriers in the system of evidence-making
How
Challenge assumptions in how we research by following dimensions of inclusive design and other models like EGAP and OCAP
Community controlled data and evidence governance
Engage community in determining what is most relevant in collection, analysis and disclosure of the data (p. 79 from Disaggregated Data: Grandmother’s Perspective)
Why
All that are affected should have equal voice in the process. Want to engender a voice for those who are voiceless and have reciprocity in the process.
Who
Provide resources and support to the community
Challenges
Need to have guiding principles for inclusive and respectful processes
Must include people on their terms
The value-base of the approach/analysis and understanding of the evidence (e.g. cost of everyone involved)
Ideally the community designs the research
Research designers – must account for diversity and human difference in their design
Community in collaboration with government
The individual vs. the cost of the problem created by the system
Framing of the question can still bias the analysis of the data or understanding of the evidence (e.g. beginning with the approach that the disabled are expensive leads to a false cost-based line of argument)
Action 3: Recognize the power of the community to create their own evidence
Group 3 Journey Map
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Description – Group 3 Journey Map
What
Strategic sharing of collective stories or data to inform decision makers.
Challenges
Dismissal of story as anecdotal.
How
Creating the safe(r) spaces where data can be gathered.
Why
To get people in the margins of the margins to participate.
Challenges
Engaging BIPOC and other groups.
Action 1: Meeting people where they are
Challenges
Including folks without access to internet
Language barriers - providing translation
How
Look at pre-internet approaches
Creative ways to share internet
Provide food and financial compensation
Train the trainers
Engage with e.g. NWAC (Native Women's Association of Canada)
Challenges
How to do these things when we're remote?
Action 2: Prioritizing BIPOC and intersectional groups to gain information that is missing
How
Think strategically about partnerships that disrupt typically dominant groups, and support diverse disability communities
Leverage existing support groups, or networks in place already - ask them to reach out.
E.g. encampment support network, food banks, disability justice network
Map existing networks
Address English language supremacy
Why
Understand if they want to be engaged, and how they want to be engaged.
Challenges
It takes a lot of work and time to form strong, trusting partnerships, need leadership in different regions, coordinating, explaining how this initiative benefits all.
Action 3: Collaboration between advocacy and equity seeking groups
Why
Intersectionality provides us with shared values.
Action 4: Media Campaign
Why
Escalate the issue.
How
Generate societal pressure with a petition
Shaming the government who signed on to CRPD (Convention on the Rights of Persons with Disabilities)
Ask the UN to intervene by engaging the Special Rapporteur on disability
Action 5: Create a "critical mass", when those we want at the table can't be there
Challenges
Not placing undue burden on folks, but also making sure those who want to be involved are able to be.