When health data can save lives, what influence should the community have on its use? This is the central question of “social license”—the ongoing acceptance and approval of an organization’s activities by the public. In health research, it is not enough for data use to be technically legal; it must also align with the community’s values and expectations.
How to gain and maintain public trust?
In June 2024, the Health Data Research Network of Canada and the Population Health Research Network in Australia hosted interactive online workshops with researchers, policymakers, healthcare providers, and members of the public. The goal? To explore how public engagement and dialogue can help us better understand community attitudes toward the use of health data in research. These workshops built on previous work by the Health Data Research Network of Canada on the social acceptability of health data, as well as research by the Population Health Research Network of Australia on community attitudes toward the use of health data by the private sector and the use of general practice data for research (see Part 1 of our series).
We asked the participants three questions:
- Have you or your organization engaged in dialogue with communities to understand their perspective on sharing health data for secondary purposes? If so, how?
- What are the main obstacles to sharing health data?
- What is the next step to support patient and public engagement in health research?
Who was present at the meeting?
Nearly half of the participants held positions related to consumer relations or public engagement. A third were researchers, while the remainder were individuals from patient/public partnerships, healthcare professionals, and policymakers. Among those who responded to the survey questions, 95% had prior experience working to understand public opinion on data sharing.
The most common way to involve the public was through advisory boards made up of patients, caregivers, or community members. These groups provide ongoing input and are valued for their continuity and ability to build relationships. One-off approaches such as focus groups, public consultations, and workshops were also widely used. More intensive deliberation methods, such as citizen juries, which bring together diverse community members to assess evidence and make recommendations, were rarely used. This may be due to the time and resources they require, but they remain valuable in their ability to elicit more informed and nuanced public judgment compared to other methods.
The obstacles we still face
Participants identified two main categories of obstacles to sharing health data:
Privacy and security concerns : Data breaches and the potential misuse of personal information have been major concerns. In Australia, the Office of the Australian Information Commissioner reported an increase in data breaches, and in Canada, at least 14 major cyberattacks against health information systems occurred between 2015 and 2023. Data breaches (whether malicious or due to human error) will continue to occur, and institutions are responding by moving toward trusted research environments to minimize risks.
Process and infrastructure issues : problems such as inconsistent data standards and a lack of data interoperability have been identified as common obstacles. Work is underway in both countries to address these issues: Canada is investing in national interoperability, and Australia in national linked data resources.
What are the next steps?
Participants formulated several recommendations aimed at improving patient and public participation and trust in data-intensive health research. These included:
Education and public awareness : many people still don’t know what health data is, how it’s used in research, or how to have a say. One participant stated that “knowledge transfer” is essential to developing “a basic understanding of what data is and how it can be used,” as well as how the public can get involved.
Effective communication and framing : How health data research is communicated is important. Telling real stories about how health data research improves lives and equity can help make its value visible and tangible. Participants emphasized the importance of demonstrating “how data can improve health equity” and the value of public participation in “co-designing health data research.”
Inclusive and transparent processes : Engagement must be respectful, accessible, and safe, especially for diverse communities. This includes training, clear expectations, and systems that reduce administrative burdens. One participant stated that it would be beneficial “to increase accessibility by modifying engagement processes and research governance.” Another participant called for transparency, safety, and inclusion to encourage patient and public participation in health research.
The workshops confirmed that public trust in the use of health data is not automatic: it must be earned and maintained. This means creating ongoing and meaningful opportunities for people to understand how their data is used, share their concerns, and see the benefits. It also means listening to those concerns and being transparent about how they influence decisions.
The next step is not only to continue these conversations, but also to integrate them into how we design, manage, and communicate health data research. Without this, we risk undermining the trust that enables the use of health data for the public good.
Authors: Julia Burt (RRDS Canada), Catherine Street (RRDS Canada), Felicity Flack (PHRN Australia), Kate Miller (PHRN Australia)
