Privacy in Health Research: Sharing Perspectives and Paving the Way Forward
CIHR Workshop held November 14-15, 2002
Canadian Museum of Nature, Ottawa
HIGHLIGHTS OF THE WORKSHOP
On November 14th and 15th 2002, the Canadian Institutes of Health Research (CIHR), Ethics Office, hosted a workshop entitled: Privacy in Health Research: Sharing Perspectives and Paving the Way Forward. The workshop was the culmination of several initiatives undertaken by CIHR over the past three years. Thanks to the members of the planning committee, our co-sponsors, workshop participants and staff, the event was a real success.
Day One
An analysis of CIHR's Case Studies on Secondary Use of Personal Information in Health Research was presented, highlighting key issues and challenges. Participants from multiple perspectives discussed specific case studies in break-out sessions, and provided individual feedback on proposed privacy principles for health researchers.
An afternoon plenary session on emerging e-health technology sparked further reflection on the need for those privacy principles to be flexible and evolutionary as our health care system undergoes major reform.
That evening, the Privacy Commissioner of Canada, Mr. George Radwanski, delivered a keynote address on his view of how the federal Personal Information Protection and Electronic Documents Act ought to be interpreted and applied in the context of health research.
Day Two
A panel presentation on recent results of research, consumer surveys and literature reviews, summarized what we know so far about consumer attitudes on the use of their personal information for health research purposes. A question & answer period helped identify what we still have to learn.
This presentation, in addition to the previous day's discussions, provided a platform for Day Two break-out sessions on next steps. These sessions led to key recommendations on a number of policy priorities including, the need to:
- harmonize privacy legislation and data access policies
- develop best practices for health researchers
- clarify and strengthen the role and responsibilities of research ethics boards
- engage the public in a broader and more meaningful policy debate
In a concluding plenary session, participants from all disciplines and backgrounds had the opportunity to offer potential research questions for CIHR to consider as part of its integrated, strategic research aimed at better informing and supporting policy-making in these areas.
In addition, two unique features were included in the workshop program. A short film, Framing the Debate, produced by students of Radio and Television Arts at Ryerson University, in collaboration with CIHR, was featured at the beginning of the Workshop to introduce the multitude of perspectives on privacy in health research. A photo exhibit, Learning in Health: All with Voice, by Andrea Morrison, provided an opportunity to reflect on some of the underlying values at stake through portraits of ordinary Canadians and health care workers, and provocative images of our health care system.
KEY OUTCOMES
1. The Quality of the Dialogue
Over 100 participants with wide ranging expertise, interests and experiences gathered together for two days to discuss, in real and concrete terms, the protection of personal information in health research. Privacy commissioners, policy-makers, data custodians, health researchers, research sponsors and health charities, health care providers, consumers, patient groups, research ethics board members, lawyers, ethicists, and experts in privacy enhancing technology shared their many perspectives and listened to one another. The richness of the dialogue between key stakeholders has come a long way from where it was two and a half years ago. Clearly, the level of sophistication has increased significantly and common language has begun to emerge. Greater recognition and respect for different viewpoints is testimony to the progress that is being made in bridging knowledge and communication gaps.
The high quality of these discussions was, in and of itself, a critical outcome of the meeting that should not be underestimated in the context of the current policy debate on privacy in health research.
2. Commitment to Next Steps
Participants developed key recommendations on a number of priority areas aimed at 1) harmonizing legislation and data access policies; 2) developing best practices for health researchers; 3) clarifying and strengthening the role of REBs; and, 4) engaging Canadians more meaningfully in a broader public debate. For each of these priority areas, goals, activities, timelines, leads and potential partners were identified. Several participants, including privacy commissioners and consumer advocates, expressed a keen interest to work collaboratively with the health research community and play an active role in future initiatives, building on, and furthering, work done by CIHR and others to date.
The momentum generated during this workshop will be critical for ongoing efforts to be led by key organizations and individuals, in close collaboration with others.
3. Future Research Agenda
Participants offered invaluable advice for possible research questions in the area of privacy. This will be the basis for a new and exciting, integrative research program to be led by CIHR's Institute of Health Services and Policy Research, in collaboration with CIHR's Ethics Office. A request for applications (RFA) on privacy issues will be relevant to all thirteen of CIHR's Institutes, and other potential partners. It will necessarily cut across different disciplines, sectors and regions to address the multi-faceted and complex issues identified during the workshop.
New knowledge gained from research will be critical for supporting policy makers, legislators, health researchers, health care providers and consumers as they work to find the right balance between the public interest in protecting the right to privacy, and the public interest in improving health and ensuring an effective and sustainable health care system.
