A fellow McMaster eHealth M.Sc. graduate, Yervant Terzian, has an interesting post on his blog "Yervant's Musings: Healthcare Through a Patient's Lens". He sent me an email asking what I thought because I attended the same conference of research ethics board professionals - the Canadian Association of Research Ethics Boards (CAREB). Yervant is now a community member of a research ethics board and I would like to welcome him to my world! I have been a research ethics board administrative professional for coming up to 14 continuous years.
Here is the link to Yervant's post:
http://yterzian.wordpress.com/2013/12/23/are-reb-members-maximizers-or-satisficers-ethics/
The talk given by Dr. Ivor Pritchard was aimed at REB professionals. Dr. Pritchord is well known in US bioethics and research ethics professional organizations (acting director of US Human Health Services Office of Human Research Protections) , but has been invited to speak at Canadian REB conferences before. I believe that he holds a PhD in Philosophy. His theory revolves around research on decision making aiming to illustrate how REB members make decisions when they review research projects for clearance. I don't believe the basis of the talk was on his own research into this subject though I may be wrong.
Let me first say that I think there needs to be more research on REBs - on all aspects of it. Research by Dr. Will van den Hoonaard on Canadian REBs was very valuable on describing the kinds of REB cultures that exist in Canada, as well as arguing how a biomedical basis formed the basis for the ethics policies - not easily extended to social science and qualitative research. There has been some research by Rachel Zand, current CAREB president, on how to educate, train and retain REB members. My colleague Dr. Brian Detlor and I presented on own research on REB information systems used by Canadian REBs at this very same conference. We have just recently posted the results on our website <here> but this will also be posted to the CAREB website this month I am told.
I agree with Yervant that the Maximizer vs Satisficer notion on REB decision making might not be the best way to describe the behaviour of REB members because it comes from a consumer behaviour model. Members of REBs are mostly volunteers, and some ethics board gurus have argued that unpaid volunteer membership on REBs is the only way to preserve ethical integrity in this work. True though, that REB members need incentives to do the ever increasing work load. True though, that altruism alone ought to be the guiding light for contributing to the integrity of research. True it is, that the behavioural effectiveness of REB members is needed more often than the efficiency of REB systems.
Applying an economic "Rational Choice Theory" to REB metrics is one way to approach an analysis for insight. However, I think the real effectiveness for this line of reasoning is more applicable for the ethics of healthcare resource allocation, which is the subject of extensive bioethical debate. Rational choice, as well as maximizers and satisficers, can be applied there, and the scenarios are very similar. Making decisions for how healthcare resources can be allocated, especially in underdeveloped countries, is heart breaking at the best of times. Should one patient be allowed a million dollar support system for an extremely rare condition when the same money can be allocated to improve the quality of life for thousands of others? Closer to home, why is physiotherapy not covered by Ontario health insurance? Why are dental services not covered? etc.
The scenarios for decision making used in our break out groups at the conference that Dr. Pritchard presented and that Yervant discusses are life and death decision scenarios. Not all REBs review research that involves life or death risks. Mostly it is medical REBs that review clinical trials involving experimental drugs for persons with terminal or chronic illness that need to decide on risks of living or dying. The risks in social science and qualitative or behavioural research are not so overtly black or white or of that nature.
Another way to look at this is that REB members as Maximizers are more likely to engage in "ethics creep" - spending a disproportionate amount of time on the minutiae of a protocol instead of the major issues. On the other hand, it would be good to have Maximizers when there are research proposals that do have major issues. For the 90% of social behavioural research reviewed by social science/qualitiatve/behavioural REBs, being a Satisficer is the way to go, because this 90% will be research that is not greater than minimal risk, or risk experienced by participants in their everyday life. Ethics review can be done on a Satisficers' "it is good enough" basis, even though it is not desirable to do so for the purposes of maintaining high academic standards of research quality.
Yervant proposes a "Traits" approach to examining how REB Members make decisions in the review of ethics applications. Perhaps that might be interesting, but I am not sure how it would improve the effectiveness of REB review. Would REB administrators start to recruit new members based on certain "traits"?
Certainly, we don't want REB members who will try to exert their own agendas, biases, etc., or who would otherwise be disruptive at meetings, or totally non-present wrapped in a cocoon of silence. In fact, REB members are assigned research ethics applications to review based on their disciplinary expertise first of all, and secondly, according to known personal interests or other areas of knowledge that they might possess. A theory of "Expert Systems" might also be applicable here in case REB members are ever replaced with IBM Watson type systems.
Anyway, I could probably write more like this for a while, but the relevance for eHealth is drifting away. Thanks very much Yervant for applying your insights to the work of REBs!
Here is the link to Yervant's post:
http://yterzian.wordpress.com/2013/12/23/are-reb-members-maximizers-or-satisficers-ethics/
The talk given by Dr. Ivor Pritchard was aimed at REB professionals. Dr. Pritchord is well known in US bioethics and research ethics professional organizations (acting director of US Human Health Services Office of Human Research Protections) , but has been invited to speak at Canadian REB conferences before. I believe that he holds a PhD in Philosophy. His theory revolves around research on decision making aiming to illustrate how REB members make decisions when they review research projects for clearance. I don't believe the basis of the talk was on his own research into this subject though I may be wrong.
Let me first say that I think there needs to be more research on REBs - on all aspects of it. Research by Dr. Will van den Hoonaard on Canadian REBs was very valuable on describing the kinds of REB cultures that exist in Canada, as well as arguing how a biomedical basis formed the basis for the ethics policies - not easily extended to social science and qualitative research. There has been some research by Rachel Zand, current CAREB president, on how to educate, train and retain REB members. My colleague Dr. Brian Detlor and I presented on own research on REB information systems used by Canadian REBs at this very same conference. We have just recently posted the results on our website <here> but this will also be posted to the CAREB website this month I am told.
I agree with Yervant that the Maximizer vs Satisficer notion on REB decision making might not be the best way to describe the behaviour of REB members because it comes from a consumer behaviour model. Members of REBs are mostly volunteers, and some ethics board gurus have argued that unpaid volunteer membership on REBs is the only way to preserve ethical integrity in this work. True though, that REB members need incentives to do the ever increasing work load. True though, that altruism alone ought to be the guiding light for contributing to the integrity of research. True it is, that the behavioural effectiveness of REB members is needed more often than the efficiency of REB systems.
Applying an economic "Rational Choice Theory" to REB metrics is one way to approach an analysis for insight. However, I think the real effectiveness for this line of reasoning is more applicable for the ethics of healthcare resource allocation, which is the subject of extensive bioethical debate. Rational choice, as well as maximizers and satisficers, can be applied there, and the scenarios are very similar. Making decisions for how healthcare resources can be allocated, especially in underdeveloped countries, is heart breaking at the best of times. Should one patient be allowed a million dollar support system for an extremely rare condition when the same money can be allocated to improve the quality of life for thousands of others? Closer to home, why is physiotherapy not covered by Ontario health insurance? Why are dental services not covered? etc.
The scenarios for decision making used in our break out groups at the conference that Dr. Pritchard presented and that Yervant discusses are life and death decision scenarios. Not all REBs review research that involves life or death risks. Mostly it is medical REBs that review clinical trials involving experimental drugs for persons with terminal or chronic illness that need to decide on risks of living or dying. The risks in social science and qualitative or behavioural research are not so overtly black or white or of that nature.
Another way to look at this is that REB members as Maximizers are more likely to engage in "ethics creep" - spending a disproportionate amount of time on the minutiae of a protocol instead of the major issues. On the other hand, it would be good to have Maximizers when there are research proposals that do have major issues. For the 90% of social behavioural research reviewed by social science/qualitiatve/behavioural REBs, being a Satisficer is the way to go, because this 90% will be research that is not greater than minimal risk, or risk experienced by participants in their everyday life. Ethics review can be done on a Satisficers' "it is good enough" basis, even though it is not desirable to do so for the purposes of maintaining high academic standards of research quality.
Yervant proposes a "Traits" approach to examining how REB Members make decisions in the review of ethics applications. Perhaps that might be interesting, but I am not sure how it would improve the effectiveness of REB review. Would REB administrators start to recruit new members based on certain "traits"?
The book You Are What You Choose by Scott De Marchi and James T. Hamilton introduces the TRAITS model and identifies 6 categories for an individual’s decision-making process: Time, Information, meToo, Altruism, Stickiness, and Risk
Certainly, we don't want REB members who will try to exert their own agendas, biases, etc., or who would otherwise be disruptive at meetings, or totally non-present wrapped in a cocoon of silence. In fact, REB members are assigned research ethics applications to review based on their disciplinary expertise first of all, and secondly, according to known personal interests or other areas of knowledge that they might possess. A theory of "Expert Systems" might also be applicable here in case REB members are ever replaced with IBM Watson type systems.
Anyway, I could probably write more like this for a while, but the relevance for eHealth is drifting away. Thanks very much Yervant for applying your insights to the work of REBs!
No comments:
Post a Comment