Your Data, Their Research – Is That Ok? Part 2
When health data could save lives, how much influence should the community have over its use? This is the question at the heart of “social licence”—the ongoing acceptance and approval of an organisation’s activities by the public. In health research, it’s not enough for data use to be technically legal; it also needs to align with community values and expectations.
How do we earn and maintain the public’s trust?
In June 2024, Health Data Research Network in Canada and Population Health Research Network in Australia hosted online interactive workshops with researchers, policymakers, health care providers and members of the public. The goal? To explore how public engagement and dialogue can help us better understand community attitudes about the use of health data in research. These workshops built on previous work conducted by HDRN Canada on health data social licence as well as research by PHRN Australia on community attitudes towards private sector use of health data and the use of general practice data for research (see Part I of our series).
We asked participants three questions:
- Have you or your organization engaged with communities to understand views on sharing health data for secondary purposes? If so, how?
- What are the biggest barriers to sharing health data?
- What is the next step for supporting patient and public engagement in health research?
Who was in the room?
Almost half of the participants worked in consumer or public engagement roles. One third were researchers, with others including patient / public partners, health care professionals and policymakers. Of those who answered polling questions, 95 percent had previously worked to understand public views on data sharing.
The most common way to engage the public was through advisory councils made up of patients, carers or community members. These groups offer ongoing input and are valued for their continuity and relationship building. One-off approaches such as focus groups, public consultations and workshops were also widely used. More intensive deliberative methods like citizens’ juries—which bring together diverse community members to weigh up evidence and make recommendations—were rarely used. This may reflect the time and resources they require, but they remain valuable in their ability to elicit more informed and nuanced judgment from the public compared to other methods.
The barriers we still face
Participants identified two main categories of barriers to sharing health data:
- Privacy and security concerns: Data breaches and the potential misuse of personal information were key concerns. In Australia, the Office of the Australian Information Commissioner reported an increase in data breaches and in Canada, at least 14 major cyberattacks on health information systems occurred between 2015 and 2023. Data breaches (both malicious and due to human error) will continue to occur, and institutions are responding by shifting towards trusted research environments to minimize risk.
- Process and infrastructure issues: Problems such as inconsistent data standards and lack of data interoperability were noted as common barriers. Work is underway in both countries to address these issues: Canada is investing in nationwide interoperability, and Australia national linked data assets.
What is needed next?
Participants made several recommendations to improve patient and public involvement and trust in data-intensive health research. These included:
Public education and awareness: Many people still don’t know what health data is, how it’s used in research, or how they can have a say. One participant said “knowledge translation” is critical to develop “a basic understanding of what data is and how it can be used,” as well as how the public can become involved.
Effective communication and framing: The way health data research is communicated matters. Telling real stories about how health data research improves lives—and equity—can help make its value visible and tangible. Participants stressed the importance of demonstrating “how data may improve health equity” as well as the value of public participation in the “co-design of health data research.”
Inclusive and transparent processes: Engagement needs to be done in ways that are respectful, accessible and safe, particularly for diverse communities. That includes training, clear expectations, and systems that reduce administrative burdens. One participant said it would be beneficial to “increase accessibility by changing engagement processes and research governance.” Another participant called for transparency, safety and inclusion to encourage patient/public involvement in health research.
The workshops reinforced that public trust in health data use is not automatic: it must be earned and maintained. That means creating ongoing, meaningful opportunities for people to understand how their data is used, to share their concerns, and to see the benefits. It also means listening to those concerns and being transparent about how they shape decisions.
The next step is not only to continue these conversations, but to embed them in the way we design, govern, and communicate health data research. Without this, we risk undermining the trust that enables health data to be used for public good.
Written by Julia Burt (HDRN Canada), Catherine Street (HDRN Canada), Felicity Flack (PHRN Australia) and Kate Miller (PHRN Australia).