Blood and Blood Products Safety and Risk (1996) / Chapter Skim
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5: Risk Communication
5: Risk Communication
Pages 109-154
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From page 109... ...
v Risk Communication
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From page 111... ...
Slovic, Fischhoff and Lichtenstein82 have shown that one can group such attributes of risk into three broad factors which allow us to reliably sort risks into a "factor space." People's perceptions of risks, including their beliefs about the need for regulatory intervention, are a strong Unction of where a risk falls in this space. Risks posed by such common and well known objects and activities as skiing, bicycles, and automobiles appear in the lower left corner 82Slovic, P
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From page 112... ...
Representiveness: the probability that an object belongs to a particular class is judged in terms of how much it resembles that class. The design of effective risk communication requires a recognition of the multi-attribute nature of risk, an awareness of the psychology of risk perceptions and judgment under uncertainty, and an analysis of the information needs of the people for whom the communication is intended.
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From page 113... ...
Conduct open-ended elicitations of people's beliefs about the hazard, allowing expression of both accurate and inaccurate concepts. Use a "mental model interview protocol" that has been shaped by the influence diagram.
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Then in step three of the process, using a closed-form questionnaire, we can determine the relative frequency with which various beliefs actually occur in the general public. Every time that we have conducted mental model interview studies to crecare a risk communication we have learned surprising and important things ~ ~ _ _ which have had a major effect on the message we developed.
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From page 115... ...
Building on the literature on risk perception and judgment under uncertainty, one should learn what people already know about the risk at hand, first through open-ended mental model interviews, and then through closed-form questionnaires. On the basis of this, and a careful assessment of the information people need to make on the decisions they face, a first draft of the communication can be developed.
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From page 116... ...
1 16 BLOOD AND BLOOD PRODUCTS: SAFETY AND RISK we developed were able to give direct, cogent, and correct advice, but the people who had read only the EPA brochure had a lot of trouble. They basically were not able to provide an answer.
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From page 117... ...
Although scientific experts are very careful to limit extrapolation beyond the data when dealing with their own disciplines, they tend go beyond the social science data (and sometimes go where no social scientist has gone before)
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From page 118... ...
When those of you in the blood industry are considering how to increase the pool of donors, you need to think in terms of social marketing. For example, the message that donating blood cannot lead to HIV infection, while a seemingly logical response to public fears, needs to be supported by empirical research on questions such as: To what extent does fear of HIV affect those people who have a record of donating blood?
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From page 119... ...
According to one study, people who give blood tend to associate blood donation with generosity, civic mindedness, and usefulness as well as feelings of assurance and relaxation. Those who do not donate blood connect donation with illness and discomfort.
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THE ROLE OF RISK COMPARISONS Risk comparisons reflect the tremendous desire on the part of scientists to compare risks that are not part of daily lives (such as the risk of contracting HIV from blood donation) with familiar risks that people take every day.
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From page 121... ...
Also, sources of bad news are more credible than sources of good news, at least in our culture, and bad news carries more weight than good news. These findings Tom the literature were applied to a study in which participants were asked to respond to statements concerning activities of a hypothetical local nuclear power plant.96 The one condition that was found to increase trust significantly referred to a local board with the power to shut down the nuclear power plant if it did not function as promised.
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DISCUSSION Question from the audience: So are you saying we need someone like Brooke Shields as a spokesperson? Caron Chess: I do not know enough about perceptions of the blood supply to know what image is going to change people's behavior toward donating blood or the blood industry.
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Caron Chess: Yes, but, and this is a major but, I think social marketing ~^ ~ ~ societal consensus. We can conduct social marketing campaigns about smoking cessation and using seat belts; we can market routine mammograms and blood donation.
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Question from the audience: You said that once trust is lost it is nearly impossible to regain. I think the public has largely lost trust in the American usual Supply hymen, for whatever reason.
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Also, if I were in your shoes I would be funding researchers to find out how people perceive blood donation and the blood industry. Richard K
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I want to share with you a couple of thoughts about something I am doing this year that has made me think about risk in a new way. This year I am working for the President's Advisory Committee on Human Radiation Experiments, a group of 13 experts and 1 nonexpert, to give it legitimacy, in the fields of nuclear medicine, radiation oncology, ethics, history, and law.
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From page 128... ...
I will very briefly say some things about what people in medical ethics have to say about risk issues and the so-called right to know. I feel very insecure when I give talks before people in the blood services because in bioethics we have done a fair job of dealing with issues in the clinical setting and in research ethics.
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From page 129... ...
This kind of framework seems to work fairly well in the clinical setting. It probably works even better in research, especially when you are talking about research that will not benefit the subjects, normal healthy volunteers, for example.
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From page 130... ...
. Informed consent: a study of patient reaction.
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There have been a string of legal cases mostly having to do with surgery from the early 1900s to the 1960s, in which surgeons removed tissues without telling people they were going to do that or why they were going to do that. Gradually, the doctrine of informed consent came along through the courts.
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From page 132... ...
How then does an autonomy-based bioethics that is multiply-sourced and pretty thin assess the very refined specific questions that come up in the field of blood services? How does a thin theory of autonomy help people to assess informing people about harms that are remote, albeit severe, and perhaps known to others?
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From page 133... ...
That is, in your field trust is perhaps uniquely important. You know pretty fast if you have lost the public trust because people stop showing up to donate or because the various interest groups that are recipients of blood give you feedback pretty fast.
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I do not know if the experience that we have had in the clinical setting can be applied to the kind of aggregate communities that we are talking about in blood. However, in the clinical setting patients feel that they know the potential harms of what the physician is recommending and have decided to accept the physician's recommendation.
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From page 135... ...
I said, yes, he could have done that, but the risk would have been higher from a directed donation. I know that when many blood banks have a directed donation and the intended recipient does not need the unit, the blood bank will not use the blood for another patient, even though it has been tested and has gone through the same screening procedure as all other donations.
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From page 136... ...
New Jersey also has a Blood Safety Act that is an unmodified version of what California had enough good sense to change. In thinking about what I have to do in my daily practice in informed consent in terms of transfusion risk and alternatives, I see a dichotomy between what you talk about, Dr.
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What we say in the clinical setting could perhaps be applied here and follows from what you just said. If people can understand the implications of what you have told them for their possible alternative futures, they can express themselves with respect to what they want for their lives, how they want to function, and that is about as much as we can expect.
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For a surgical procedure, for example, you would give a relatively concise explanation, with the patient then given an explicit invitation to ask questions. If the patient asked questions, there is another tier to this information.
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We find ways to adapt our public philosophy to real-world constraints. However, we are not very good either in bioethical theory or in our society in figuring out how to strike the balance that you point out needs somehow to be struck.
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Jonathan Moreno: A few years ago this was a subject of great discussion at a meeting of the American Association of Blood Banks and there was a general agreement that that ought to happen. It seems to be needed.
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Question from the audience: I have a question having to do with the statement that bad news has more credibility than good news and that sources of bad news are more reliable than sources of good news. I wonder what it is about our profession that has resulted in this sad state of affairs.
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We know that most individuals and organizations always try to cast themselves in positive and good lights. When you do hear a bit of bad news, it tends to be a somewhat rare event, and so people tend to pay attention.
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The second concerns the shift from radical mastectomy to lumpectomy in terms of patient involvement and risk tolerance. Let me start with human experimentation.
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It was decided, with NIH as the driving force, that we would no longer leave risk calculus to the investigator on the grounds that the investigator was not a neutral figure in this calculation. The investigator's first charge was to accumulate knowledge.
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You will find in elements of risk calculus that we have accepted informed consent as the basis for approval. We anticipate through IRB and consent that ultimately we do share risk analysis collectively and ultimately trust the choice made by the subject.
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DISCUSSION Paul Russell: There is no question that we must strive toward informed consent. There is also no doubt that it is a very flawed process and that we cannot get to total informed consent.
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David Rothman: The answer to that is absolutely yes, you have to bring it back into line. No patient is going to ever get to exercise informed consent on his own unless the physician helps him realize it.
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This is good for you. If you don't do it, you will be more ill." With respect to blood and blood products, I believe we should be moving toward a signed informed consent.
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In the case of transfusion it could be applied a little bit more broadly and repeatedly in the case of patients like those you are familiar with. Harvey Klein: Informed consent for blood transfusion has been national policy since 1986.
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The package inserts were developed to inform the physicians, whose job it is to infonn the patient who receives a blood transfusion. Paul Schmidt: There was a study about 3 years ago in which a group of investigators doing informed consent talked to patients after surgery and then some months later.
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From page 152... ...
The question was whether they could recall in their careers ever having a potential subject in one of their experiments who listened to their pitch, read the informed consent form, and said, "No, I am not interested." In fact, none of them could think of a single instance in which that happened. For the audience today, I would ask you to think back and tell us how many times have you had a patient leave the office after you described what the risks were?
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From page 153... ...
1 ~ William Sherwood: There is also a great deal of informed consent that is really for comfort. Virtually all hospitals instituted an informed consent for transfusion, particularly prior to surgery.
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From page 154... ...
Harvey Klein: Many good hospitals don't consider informed consent a form given at the time of intake with a clerk. That really isn't informed consent.
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