When dignity meets evidence
Throughout its 40-year history, proponents of evidence-based practice, including people also advocating for dignity-based practice, have pointed at its blind spots.
The need for dignity-based practice is now recognised in health care (eg, with shared decision making in caregiving and patient-determined outcome measures in research) and in health policy (eg, with citizen juries in policy making and with critical realist, critical epidemiology, and participatory action research).
We are all entitled to dignity because we possess certain ethically important features. One of those human features is that we are knowers. We know things. We learn. We make sense of what we know. We interpret our realities and the systems within which we have our being. If this feature is not respected, one’s dignity is violated. There is a kind of knowledge practice we may call dignity-based practice.
When the movement for evidence-based practice started in the early 1980s, its mission was to de-emphasise unsystematic experience in clinical decision making, and to rely instead on statistical estimates of risk from clinical research on population samples. In time, its proponents learned, shifted their goals, and recognised that in health care, evidence-based practice is a tripod of clinical evidence, clinical expertise, and patient preference. But they did not adequately recognise that respecting the dignity of the patient as a knower suggests that expertise should also include the expertise of patients—on their body, their experience of pain or joy, and how they weigh the risk of harm against benefit. A patient’s expertise informs their preferences and how they make sense of the evidence.
With dignity-based practice, patients would also influence what evidence is generated in the first place. Gaps in clinicians’ knowledge inform research questions; and so should gaps in patients’ knowledge. With complexity, there is a need for the expertise and preferences of patients to shape the evidence. For a simple question (eg, does a drug reduce fever?), evidence generation can aim for the universal, with the research question specified and answered irrespective of patient expertise or preference. For a complex question (eg, how should service delivery be organised?), dignity considerations must shape the research question and the methods used to answer it, including the analysis of data and interpretation of findings. A clinician, researcher, or policy maker cannot assume to know what another person needs, knows, or how they make sense of what they know, especially if they are positioned at a distance from the patient, research participant, or community—be it physical distance, or distance in terms of power, income, gender, race, ethnicity, caste, or class.
