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Improving ethics and governance outcomes for research using qualitative methods in healthcare - reducing administrative burden and ensuring appropriate review [THREAD] (1/x)
Ensuring safe and ethical practice involves considering both omission and commission (risks involved in what is done, and what is not done/prevented or delayed) (2/x)
Much current focus appears to be on the former, with little attention paid to the latter. We need to recognise also that stifling research, particularly where it involves complex healthcare processes, is a significant potential harm and in many cases avoidable. (3/x)
Many researchers using qual methods (often with decades of experience) face unclear or exaggerated perceptions of risk in governance processes, that are offered without reference to any convincing underpinning knowledge or rationale (4/x).
Those using qual methods can therefore be presented with governance burdens that are proportionally greater than those that come with other activities carrying ostensibly greater risks (i.e. routine clinical work) (5/x)
The burden often appears excessive for researchers to simply talk to people, or carry out observations in public areas, involving participants with mental capacity, in ways compliant with legislative and ethical requirements. (6/x)
There's also questions of review expertise-at minimum, all researchers (and the public) should be able to expect a minimum standard of knowledge and expertise in governance. In practice this is lacking in more examples than should be the case. (7/x)
Having looked and listened over the past ten or so years (mostly to people with greater knowledge and experience than me) a few suggestions present themselves. (8/x)
i) Ensure appropriate expertise and resources are available to support review-Many problems appear to be because time and resource aren't given to appropriate reviewers, and so it's the first person available that gets given the job (or is pressured to do so). (9/x)
ii) In other fields, reviewers often withdraw from governance discussions under guidelines for relevant expertise. They have institutional resources (and thus legitimacy and agency) to challenge inappropriate assessment-this can be instructive for qual assessments. (10/x)
iii) Improve mechanisms for challenging inappropriate review. Most aren't willing or feel it's inappropriate/too risky to challenge-we could look at mechanisms for improving this, and resource organisations with capacity to respond to challenge (11/x)
iv) Encourage and provide resources for committees/organisations to undertake systematic institutional learning to inform their practice (i.e. from review of previous case examples). (12/x)
The distributed nature of many ethics and governance systems (i.e. isolated individuals instead of panels that meet) has many advantages, but risks losing this institutional learning if not collated centrally and communicated to teams. (13/x)
v) Develop/strengthen evidence-based resources to evaluate risks and inform mitigation strategies-there are often limited resources for researchers to contest overly general or inappropriate claims in ethics and governance. (14/x)
While in most cases it's of course not possible or appropriate to have, say, risk ratio calculations or similar for observations/focus group/interview data collection-that doesn't mean evidence can't be drawn from the wealth of existing research and experience. (15/x)
Producing method and context-relevant descriptive reviews of prior research which focus on conduct, risk mitigation strategies, and frequency of 'adverse events' (research not clinical) may be helpful in providing guidance to support more proportionate evaluation of risk. (16/x)
We can ask ask: what has gone wrong (or nearly) in x decades of y observation/interview/focus group approach?; what were the relevant mechanisms/processes/contexts?; how frequently did they occur; what was the severity of outcome; what learning was gained re: mitigation? (17/x)
Addressing this will therefore involve production of tools that both provide guidance and institutional(ised) resources to support researchers in making and legitimating claims regarding qualitative expertise. (18/x)
vi) Consider hybrid systems that bring panel discussions back into ethics evaluation - panels have been replaced in many cases with distributed, disconnected review processes conducted entirely through email (or other text based systems). (19/x)
While this has in some cases helped with response times (and institutional cost burdens), it also removes mechanisms of conversation/deliberation that are crucial for working through complex practical issues that affect studies using qual methods in healthcare research. (20/x)
These are just a few ideas, all of which have almost certainly been covered in greater depth by others. But equally I think they need restating, because much of this is accepted as the 'cost of doing business' - and in my view the cost is unnecessarily high. (21/x)
It costs time and resource - and it costs people. In ten or so years of conducting research using qual methods in healthcare, I've seen more people than I can count on two hands who have been so affected by the worst of this, that it becomes a major reason why they leave. (22/x)
They get to the point where, having committed so much time, effort (sometimes money and a prior career) to PhDs, post-docs, and early career projects, they simply can't bear the burden of opaque and capricious systems within which they have very little agency (or capacity) (23/x)
Some go off and do something entirely different - others find similar forms of work allowing them to address concerns that motivated academic work without unnecessary and stifling burdens. (24/x)
Since COVID hit, there have been signs that governance processes can adapt and respond when faced with the challenge to do so. I've had great support by some very over-worked and stressed people in ethics and governance, particularly since March. (25/x)
But institutions must act as if ethics and governance are as important as they are - by ensuring appropriate organisation and resource support is there to prevent harm from bad practice, without stifling vital work on complex healthcare problems. (END)
