Who owns OUR data?

Who owns OUR data?


  What if patients were not only providing, but also collecting, managing and interpreting their own data as a basis for QI? 

PaCER researchers Svetlana Shklarov, MD, PhD and Marlyn Gill, MSW were invited to lead a one-hour interactive workshop On October 20th in Calgary for A Projects Ethics Community Consensus Initiative (ARECCI) Forum, presented by Alberta Innovates, for health care professionals and researchers.  The workshop focussed on peer-to-peer ethics in quality improvement (QI) and evaluation projects with about 50 people in attendance who were actively engaged, asked many questions, and provided some interesting input in terms of professional views and reflections on peer research. It is exciting for PaCERs to see the enthusiasm that is building with regards to the advantages of our research approach as well as an increased level of understanding and acceptance of the processes and challenges.

The following is a synopsis of the workshop:

In the world of evidence-based quality improvement (QI), most of the data collection and management is driven by the values and standards of health system managers, practitioners, and funding agencies. Ethical oversight of this work is regulated by solid professional principles. What if patients and caregivers themselves were designing and conducting QI and evaluation projects? What if patients were not only providing, but also collecting, managing and interpreting their own data as a basis for QI? 

This workshop invites participants to explore “data’s journey” with patients specifically trained to do this kind of data work. In such projects patients collaborate with health care providers and leaders, working together in teams on evaluating and improving the quality of health care. This model was pioneered by PaCER in partnership with Alberta Health Services Strategic Clinical Networks™. A year-long PaCER Internship trains patients to design and conduct projects based on adapted methods of collecting qualitative data: observation, questionnaires, focus groups and interviews.

The workshop will allow the attendees to: 

  1. Explore the experiences of ethical data collection and analysis in qualitative projects led by patients (based on vignettes and sharing of experiences). 
  2. Identify and analyze specific ethical aspects of data’s journey as part of patient-led projects: anonymity, transparency, data ownership, essential patients’ input in data analysis and interpretation, team work and commitment to peer-to-peer ethics. 
  3. Justify the confidence in safe, ethical data treatment in well-planned patient-led quality improvement projects.

If you are interested in attending, this workshop will be offered again on Friday, November 24th from 9:00am to 3:30pm at the Kahanoff Centre (105 12th Avenue SE, Suite 200, Calgary) as part of the ARECCI Ethics Forum: Data’s Journey, Avoiding Ethical Pitfalls.
Registration is $43 + tax (includes lunch).  

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