Questioning the Quantitative Imperative: Decision Aids, Prevention, and the Ethics of Disclosure

Patients should not always receive hard data about the risks and benefits of a medical intervention. That information should always be available to patients who expressly ask for it, but it should be part of standard disclosure only sometimes, and only for some patients. And even then, we need to think about how to offer it

Discounting a Surgical Risk: Data, Understanding, and Gist

Excerpt: A few days after the surgery, Ms. Reid came in for an emergency appointment with Dr. Feng. It was obvious that she was irate,but her voice could barely be heard above the noise of the clinic. "I thought you said this was rare," she said, shaking a printout of a journal article on the subject. My recurrent laryngeal nerve was injured. I'm a teacher, and I have children! I need my voice. I would have never done the surgery if I knew there was a 4 percent risk that I would lose my voice!" Was Dr. Feng negligent in explaining the risks of surgery to Ms. Reid? Was she required to use precise percentages of risk

How Bioethics Principles Can Aid Design of Electronic Health Records to Accommodate Patient Granular Control

Ethics should guide the design of electronic health records (EHR), and recognized principles of bioethics can play an important role. This approach was adopted recently by a team of informaticists designing and testing a system where patients exert granular control over who views their personal health information. While this method of building ethics in from the start of the design process has significant benefits, questions remain about how useful the application of bioethics principles can be in this process, especially when principles conflict. For instance, while the ethical principle of respect for autonomy supports a robust system of granular control, the principles of beneficence and non-maleficence counsel restraint due to the danger of patients being harmed by restrictions on provider access to data. Conflict between principles has long been recognized by ethicists and has even motivated attacks on approaches that state and apply principles. In this paper we show how using ethical principles can help in the design of EHRs by first, explaining how ethical principles can and should be used generally, and then by, discuss how attention to details in specific cases can show that the tension between principles is not as bad as it initially appeared. We conclude by suggesting further ways in which the application of these (and other) principles can add value to the ongoing discussion of patient involvement in their health care. This is a new approach to linking principles to informatics design that we expect will stimulate further interest

To Be or Not to Be – A Research Subject

Most people do not know there are different kinds of medical studies; some are conducted on people who already have a disease or medical condition, and others are performed on healthy volunteers who want to help science find answers. No matter what sort of research you are invited to participate in, or whether you are a patient when you are asked, it’s entirely up to you whether or not to do it. This decision is important and may have many implications for your health and well-being, as well as those of other patients now and in the future. Making a good decision – the right one for you – requires you to become educated about topics you may not have thought about before, some of which may be quite complicated. This chapter explains the key issues to help you make a good decision

Using Search Queries to Understand Health Information Needs in Africa

The lack of comprehensive, high-quality health data in developing nations creates a roadblock for combating the impacts of disease. One key challenge is understanding the health information needs of people in these nations. Without understanding people's everyday needs, concerns, and misconceptions, health organizations and policymakers lack the ability to effectively target education and programming efforts. In this paper, we propose a bottom-up approach that uses search data from individuals to uncover and gain insight into health information needs in Africa. We analyze Bing searches related to HIV/AIDS, malaria, and tuberculosis from all 54 African nations. For each disease, we automatically derive a set of common search themes or topics, revealing a wide-spread interest in various types of information, including disease symptoms, drugs, concerns about breastfeeding, as well as stigma, beliefs in natural cures, and other topics that may be hard to uncover through traditional surveys. We expose the different patterns that emerge in health information needs by demographic groups (age and sex) and country. We also uncover discrepancies in the quality of content returned by search engines to users by topic. Combined, our results suggest that search data can help illuminate health information needs in Africa and inform discussions on health policy and targeted education efforts both on- and offline.Comment: Extended version of an ICWSM 2019 pape

Older Adults and Forgoing Cancer Screening

Although there is a growing recognition that older adults and those with extensive comorbid conditions undergo cancer screening too frequently, there is little information about patients’ perceptions regarding cessation of cancer screening. Information on older adults’ views of screening cessation would be helpful both for clinicians and for those designing interventions to reduce overscreening

Bringing values back in: the adequacy of the European Social Survey to measure values in 20 countries

Values are prominent in public discourse today. Theorists have long considered values central to understanding attitudes and behavior. The Schwartz (1992) theory of basic human values has promoted a revival of empirical research on values. The semi-annual European Social Survey (ESS) includes a new 21-item instrument to measure the importance of the ten basic values of the theory. Representative national samples in 20 countries responded to the instrument in 2002-3. We briefly describe the theory and the ESS instrument and assess its adequacy for measuring values across countries. Using multiple group confirmatory factor analyses, augmented with mean-structure information, we assess the configural and measurement (metric) invariance of the values—necessary conditions for equivalence of the meaning of constructs, and scalar invariance—a precondition for comparing value means across countries. Only if such equivalence is established can researchers make meaningful and clearly interpretable cross- national comparisons of value priorities and their correlates. The ESS values scale demonstrates configural and metric invariance, allowing researchers to use it to study relationships among values, attitudes, behavior and socio-demographic characteristics across countries. Comparing the mean importance of values across countries is possible only for subsets of countries where scalar invariance holds