Recently, Open North teamed up with the Yukon Status of Women Council (YSWC) to tackle what we view as a crucial issue: enhancing data governance to advance access to abortion services in the Yukon.
We have had the privilege to be invited into this space to share our experiences in data governance and apply them to a specific context and set of very practical challenges. In addition, working in the Yukon presented a unique opportunity to operationalize our work in a rural, remote, and northern context. Funded by Women and Gender Equality Canada and led by the Yukon Status of Women, our contribution aimed at increasing data capabilities through data governance for the Opal Clinic, the Yukon’s only dedicated reproductive health care clinic offering abortion services.
This blog post will share some of the key reflections emerging from this experience and seeks to contextualize the lessons learned within our ongoing partnerships and advocacy for better data governance and digital transformation in support of achieving gender equality.
What is data governance for reproductive care anyway?
Data governance refers to the processes and decisions involved in managing data, including how it is collected, processed, analyzed, and shared. It also involves deciding who gets to access the data and for what purposes. Effective data governance requires transparency, understanding of power dynamics, and collaboration with stakeholders.
Processes and decisions around data are always taking place, whether explicitly or implicitly. Sometimes these decisions are imposed unilaterally by those in a position of power and sometimes these are adopted and promoted by those who have been historically excluded from decision making. In the Yukon, for example, decisions about how data is governed may be informed by territorial government regulations around health data and health data records as well as principles and norms around data established by self-governing First Nations.
Our previous experiences in health research contexts, such as our recent work with the PULSAR network in Quebec, show that health data is subject to data governance processes. Health data can include information from registries, clinical trials, and electronic health records. It can include multiple stakeholders not limited to health providers, such as researchers, public administrators, community leaders and representatives, and the general public.
Abortion procedures generate significant amounts of health data, which makes data governance salient in the space. These data can help make important policy decisions, understand overall population trends and help direct resources to specific areas and emerging needs in abortion care. On the other hand, abortion and reproductive health data require a higher threshold of care. Stakeholders should consider privacy and sensitivity of information when dealing with this sensitive kind of information. In the Yukon, for example, the Health Information Privacy and Management Act (HIPMA) defines and regulates the use of health data. From our experience and observations, concerns around health data go beyond minimal compliance. Abortion service providers, community organizations, and advocates in the space take multiple steps and go through great effort to prevent the potential mishandling of client/patient information well beyond HIPMA requirements. This is done in alignment with values and missions, as organizations in this space serve populations that are targeted because of their gender, sexuality, and/or other intersecting identities.
Why data governance in abortion matters
Data governance is essential for advancing reproductive justice. Good data practices are impactful in two ways:
First, for organizations working on reproductive health, abortion services, and other front-line support, having robust data governance can make a big difference in their ability to carry out their day-to-day operations and to understand larger trends. For example, a service provider that has a clear understanding of what data it holds and how it is used (or not) can more effectively leverage existing data (such as billing codes for procedures) rather than collecting new data. This reduces time spent on entering duplicate data, decreases the amount of data that could be leaked, and lowers the burden on clients to repeatedly share details of their experience with different staff.
Second, for those advocating for better reproductive health services across the Yukon Territory and elsewhere, data governance helps balance the protection of individuals the data refers to (often from vulnerable, historically marginalized populations) with efforts to better understand barriers to services, including the differentiated experiences of individuals accessing services. For example, to have an abortion, some individuals might need to secure a vehicle, pay for gas, take time off work, and/or even find a place to stay overnight in proximity to a clinic or hospital. Researchers infer these differentiated experiences of individuals by measuring the distance traveled to access reproductive care services, along with other markers such as ethnicity or Indigeneity. In an ideal research scenario, this information is readily available in the form of aggregates and it informs funding decisions and policymaking. Informed, data-driven policy making mitigates lack of access to abortions for a given population group as decision makers direct funding and efforts in a targeted and systematic way. However, the ideal is problematic as individuals and advocates raise valid concern on the protection of privacy in their health data. This latter point is extremely salient in the Yukon. When communities are small, protecting the privacy of individuals is tricky. For example, measuring distance traveled to access an abortion can have potentially negative repercussions for individuals seeking care. If other data points about an individual – such as age or ethnicity are readily available, then removing personal information is not enough to protect the identity of an individual. It is relatively easy to identify someone that is a racialized, immigrant woman and who recently went on a roadtrip to Whitehorse for one day if the total population in the community they came from is only 200 individuals. The likelihood of more than two or three individuals checking all those boxes is very small. More data, even in aggregate form, is not the most appropriate solution to data quality issues.
Data governance helps us bridge that gap between abortion care providers, who are often requested to report on certain details of individuals accessing their services, and governmental authorities, researchers, philanthropic organizations, and donors who want to understand barriers to accessing abortion in order to inform policy and decision making. It can facilitate a conversation on the different needs of stakeholders for data, prioritize and direct resources to specific actions to collect, use, and share certain data, and question the validity, usefulness, and impactfulness of practices and decisions around data. For example, for the Opal Clinic, Open North recommended principles of data minimization – that is, to only collect and share enough information to meet specific operational requirements, and to align the data they collect and hold with wider access to abortion advocacy efforts in Canada. A data governance framework helps justify this decision to only collect certain information with a specific advocacy goal in mind, as it reflects how important it is that Opal protect and safeguard individuals, whilst advancing advocacy on access to abortion for all.
Data governance to make better systems
At a systemic level, the work with Opal Clinic helps YSWC to better understand and improve overall governance and sustainability of reproductive care and access to abortion in the Yukon Territory. We see our engagement as an important use case for data governance in abortion care.
Informed decision making is key to effectively funnel funds, make policy, and address the needs of the population. However, in an effort to be “data-driven,” government donors, philanthropic organizations, and other sources of funding often impose burdensome indicators to programing and fund disbursement. Front-line service providers, reproductive justice advocates, and leaders often have to justify trends they see and experience on the ground to access funds and continue providing essential services. Indicators and metrics often do not match the needs and realities on the ground. As a consequence, policy makers end up using poor quality data to inform decisions.
Our efforts to create and implement data governance frameworks aims to challenge this cycle. It shows that key stakeholders, such as the Opal Clinic, can make conscientious decisions around data that advance the needs of populations served. Although data governance efforts can be led by governments seeking to improve the service provision – as is the case with Open North’s work in other contexts – our recent work in the Yukon shows that data governance efforts can also be initiated at the grassroots.
Abortion data is an area where we aim to support leaders, advocates, and service providers in reproductive care. Data governance is only one element for achieving reproductive justice. At Open North, we hope to continue contributing our knowledge and experience in service of reproductive justice advocates in the Yukon and across Canada.