The underlying problem is that universities around the world press their staff to write whether or not they have anything to say. This amounts to pressure to cut corners, to value quantity rather than quality, to exaggerate the consequences of their work and, occasionally, to cheat. People are under such pressure to produce papers that they have neither the time nor the motivation to learn about statistics, or to replicate experiments. Until something is done about these perverse incentives, biomedical science will be distrusted by the public, and rightly so. Senior scientists, vice-chancellors and politicians have set a very bad example to young researchers. As the zoologist Peter Lawrence at the University of Cambridge put it in 2007:
But there is good news too. Most of the problems occur only in certain areas of medicine and psychology. And despite the statistical mishaps, there have been enormous advances in biomedicine. The reproducibility crisis is being tackled. All we need to do now is to stop vice-chancellors and grant-giving agencies imposing incentives for researchers to behave badly.
problems essay value
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The previous chapter reviewed the value of privacy, while this chapter examines the value and importance of health research. As noted in the introduction to Chapter 2, the committee views privacy and health research as complementary values. Ideally, society should strive to facilitate both for the benefit of individuals as well as the public.
In addition to defining health research and delineating its value to individuals and society, this chapter provides an overview and historical perspective of federal research regulations that were in place long before the Privacy Rule was implemented. Because a great deal of medical research falls under the purview of multiple federal regulations, it is important to understand how the various rules overlap or diverge. The chapter also explains how the definition of research has become quite complex under the various federal regulations, which make a distinction between research and some closely related health practice activities that also use health data, such as quality improvement initiatives.
Like privacy, health research has high value to society. It can provide important information about disease trends and risk factors, outcomes of treatment or public health interventions, functional abilities, patterns of care, and health care costs and use. The different approaches to research provide complementary insights. Clinical trials can provide important information about the efficacy and adverse effects of medical interventions by controlling the variables that could impact the results of the study, but feedback from real-world clinical experience is also crucial for comparing and improving the use of drugs, vaccines, medical devices, and diagnostics. For example, Food and Drug Administration (FDA) approval of a drug for a particular indication is based on a series of controlled clinical trials, often with a few hundred to a few thousand patients, but after approval it may be used by millions of people in many different contexts. Therefore, tracking clinical experience with the drug is important for identifying relatively rare adverse effects and for determining the effectiveness in different populations or in various circumstances. It is also vital to record and assess experience in clinical practice in order to develop guidelines for best practices and to ensure high-quality patient care.
When patients consent to the use of their medical records in a particular study, health researchers should make greater efforts at the conclusion of the study to inform study participants about the results, and the relevance and importance of those results. Learning about clinically relevant findings from a study in which a patient has participated could make patients feel more integrated into the process and could encourage more to participate in future studies. A recent United Kingdom report on the use of personal data in health research concluded that public involvement in research is necessary for the success of information-based research, and that a public informed about the value of research is likely to have greater enthusiasm and confidence in research and the research community (AMS, 2006). Moreover, direct feedback with study participants could lead to improved health care for the individuals if the results indicate that an altered course of care is warranted.
Conveying the value of medical records research to patients will be important. Surveys show that people are more supportive of research that is relevant to them and their loved ones. At the same time, educational efforts should stress the negative impact of incomplete datasets on research findings. Representative samples are essential to ensure the validity and generalizability of health research (Box 3-8), but datasets will not represent the entire population if some people withhold access to their health information.
Thus, HHS and the health research community should work to edu cate the public about how research is done and the value it provides. All stakeholders, including professional organizations, nonprofit funders, and patient organizations, have different interests and responsibilities to make sure that their constituencies are well informed. For example, the American Society of Clinical Oncology and the American Heart Association already have some online resources to help patients gather information about research that may be relevant to their conditions. But coordination and identification of best practices by HHS would be helpful, and research is needed to identify which segments of the population would be receptive to and benefit from various types of information about how research is done and its value in order to create and implement an effective plan.
Greater use of community-based participatory research, in which community-based organizations or groups bring community members into the research process as partners to help design studies and disseminate the knowledge gained,39 could help achieve this goal. These groups help researchers to recruit research participants by using the knowledge of the community to understand health problems and to design activities that the community is likely to value. They also inform community members about how the research is done and what comes out of it, with the goal of providing immediate community benefits from the results when possible.
It will also be important for HHS and researchers to convey the value of health care improvements derived from medical records research, and to stress the negative impact of incomplete datasets on research findings. Representative samples are essential to ensure the validity and generalizability of health research, but datasets will not be representative of the entire population if some people withhold access to their health information. A universal requirement for consent or authorization in information-based research may lead to incomplete datasets, and thus to biased results and inaccurate conclusions. Numerous examples of important research findings from medical records research would not have been possible if direct patient consent and authorization were always required.
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This article is really interesting to apply 14 years later. In a way, it seems completely outdated, as political facts and values are, at this point, almost completely intertwined. Each side "spins" facts to correspond to their own values, and in the U.S., at least, each side accuses the other of spreading "fake facts." But that just means that understanding the difference between facts and values is all the more important.
Many conflicts involve disputes about facts and values. Despite important differences, facts and values are often confused -- a conflict of values may be thought to be a conflict of facts, or vice versa. Because of the nature of their differences, factual issues and value issues will contribute different kinds of problems to a conflict. Parties must be able to sort these out, handling each type appropriately, in order to be able to address a conflict constructively.
Values, as opposed to facts, have a clearly subjective element. They vary from person to person and from situation to situation. For example, a value judgment is called upon to answer each of the following questions:
The answers to these questions are both subjective, in that each of us likely has our own opinion, and relative, in that they may be answered in different ways in different contexts. Perhaps you or I like the Democrats' foreign policy in today's state of the world, but would favor the Republican approach at some other time. A moment of prayer may be quite appropriate in a Catholic school, but is probably inappropriate in a public school. Some value issues are relative to a social or religious group - I may work on a Saturday without giving the matter much thought, but an Orthodox Jew would view it as a violation of the Sabbath.
Questions that call for value judgments are not susceptible to matter-of-fact answers. We expect people to have different personal opinions on such matters. Though you and I may argue over a value judgment, we are likely at some point to accept whatever differences we may have. We also tend to accept the fact that people with differing cultural backgrounds and/or religious views will have different sets of values. Members of a cultural or religious group expect similar values of other members, but do not expect these values to be found in non-members. So, for example, if I have several Jewish co-workers they might expect each other to observe the Sabbath and avoid working on Saturday, but none of them will be offended if I, a non-Jew, work on Saturday. 2ff7e9595c