Media Analysis of the Canadian Deemed Consent Policy

No man is good enough to govern another man without the other's consent. I say this is the leading principle—the sheet anchor of American republicanism. —Abraham Lincoln

What a pleasure it is, as a policy professional and 42-year patient with kidney disease, to review a CJASN article outside the familiar lanes of scientific research on kidney diseases and treatments (1). Instead, the authors of “A Qualitative Content Analysis of Comments on Press Articles on Deemed Consent for Organ Donation in Canada,” published in this issue of CJASN, have provided the kidney community with a thoughtful approach for assessing public perceptions related to ambitious kidney proposals (1). In this instance, they used retrospective media analysis to assess a Canadian kidney policy predicated upon a mandate that restricts individual freedom to address shortages in kidney donation.

This is not an article that provides a fresh argument in defense of or in opposition to the use of presumed consent laws to affect organ donation rates. The authors meticulously avoided biasing their analysis with a particular viewpoint or by putting their work in service to a particular agenda. Instead, they provide an impartial analysis of 4357 public comments related to 35 online news articles on deemed consent that appeared in four Canadian newspapers. The news coverage centered on the 2019 adoption of presumed consent legislation in two Canadian provinces: Alberta and Nova Scotia.

Through qualitative analysis, the researchers sorted public comments into three major buckets, each composed of three key themes. In the first bucket were perceived positive implications of the legislation and major themes such as majority rules, the societal effect, and the prioritization of organ donation. The second bucket included perceived negative implications of the legislation, with the themes of the right to choose, the potential for abuse and errors, and the possible slippery slope that presumed consent would extend to other policy issues. The third bucket included themes related to policy development and implementation, including transparency and communication, process clarification, and evidence for legislation.

The authors acknowledged that their methodology was not a precise tool and were transparent regarding the limitations of their analysis and findings. Weaknesses cited included the validity of using public comments for research, the potential for bias due to concerns related to clickbait and bot responses, the lack of clarity on the number of unique individuals commenting, and the inability to collect demographic data to compare the views of individuals. Further, the authors indicated that data may have been skewed because eight news stories on deemed consent that appeared in the National Post, an outlet with a more conservative readership, were not available for inclusion in their study. This is an important note because as the authors admit, the online public comments tied to those stories and news outlet may have generated different types of comments.

In an era when consensus policy is rare and multiple communications platforms can affect public opinion and policy outcomes, are these insights valuable? As academic research, given the limits of the methodology, the answer is mixed. However, outside the confines of academia, their research and insights are tremendously valuable—especially in the hands of experienced policy professionals and patient advocacy organizations involved in efforts to advance or defeat policy solutions that pivot on broad government mandates. Their methodology represents a low-cost and adaptable tool for proactively assessing the political terrain to detect fissures among key stakeholders and to gauge the potential public appetite for controversial solutions. Initial insights could always be tested or augmented with additional granularity through follow-up focus groups and surveys.

The article also offers a valuable lesson to well-intentioned kidney advocates in the United States because several proposals similarly predicated to the Canadian legislation are perennial failures in the US Congress and rejected by major patient advocacy organizations. These include legislative proposals for direct payments for organs and deemed consent. A nascent effort to increase shared decision making and conservative care uptake through required conversations between patients and medical professionals, via a mandate from the Centers for Medicare and Medicaid Assistance, before access to dialysis or transplant listing is approved will certainly meet a similar failure. The architects of these policy proposals show little interest in using retrospective media analysis as a proactive means of assessing stakeholder community interest or addressing predictable, legitimate concerns of opponents and even wider public concerns related to process, evidence, and implementation.

The time and resources available to affect substantive changes in national kidney policy are extremely limited. So too are the attention spans of elected and appointed leaders with the willingness to advance consensus proposals important to patients and our allies across the kidney community. Perhaps, before more precious energy is expended on proposals with little likelihood of success, it would be wise for some within our community to follow the research example set by our Canadian colleagues. During this Decade of the Kidney, we need more consensus policy proposals that can win, not more windmills, and more architects for victory, not more Don Quixotes.

Disclosures

P.T. Conway reports honoraria from Baxter and the Novartis/Global Transplant Patient Reported Outcomes Patient Advisory Committee & Rare Kidney Disease Community Council. P.T. Conway reports leadership/advisory roles as the cochair of the American Association of Kidney Patients/George Washington University School of Medicine & Health Sciences Global Summit on Kidney Disease Innovations; as the chair of Policy & Global Affairs and past president of the American Association of Kidney Patients; on the Nephrology Specialty Board of the American Board of Internal Medicine; for the Centers for Disease Control and Prevent Health Infections Control Practices Advisory Committee; as a Patient Voice Editor of CJASN; as cochair of the Centers for Medicare and Medicaid Dialysis 5 Star Technical Evaluation Panel; for the Congressionally Directed Medical Research Program of the Department of Defense; for the Food and Drug Administration Cardiovascular Devices Advisory Committee; as chair of the Food and Drug Administration Medical Devices Advisory Committee; as the chair of the Patient Engagement Advisory Committee of the Food and Drug Administration; for the Kidney Health Initiative; on the Observational Study Monitoring Board of the Kidney Precision Medicine Project, National Institutes of Health (NIH)/National Institute of Diabetes and Digestive and Kidney Diseases; on the Contract Management Board of the Renal Data System; on the Advisory Board of the University of Pittsburgh/NIH Acute Kidney Injury-Caring For Outpatients study; and for the World Health Organization Lived Experience Research.

Funding

None.

Author Contributions

P.T. Conway wrote the original draft.