ABC News Genetic Engineering Poll, April 1990 (ICPSR 9458)
Building Patient-Centered Outcomes Research Value and Integrity with Data Quality and Transparency Standards [Methods Study], United States, 2013 - 2018 (ICPSR 39529)
Many healthcare systems use electronic health records. Researchers use data from these records in their studies. Some records have missing or incorrect data. When this happens, people might not be able to trust a study's results. The research team wanted to:
- Create guidance to judge whether data that a study used were high quality
- Find new ways to display the quality of data
- Learn why researchers don't always report the quality of data that they used in studies
To access the methods and software, please visit the DQCODE-A-Thon GitHub.
CBS News Monthly Poll #2, January 1998 (ICPSR 2452)
CBS News Monthly Poll #3, March 2005 (ICPSR 4323)
Demonstrating Respect and Acceptable Consent Strategies: What Matters to Patients in Patient-Centered Outcomes Research (PCOR)? [Methods Study], United States, 2017 (ICPSR 39575)
Before people can join a research study, they need to provide informed consent. Informed consent is a process that helps people know
- What a study is about
- What will happen in the study
- The benefits and risks people may experience
- That they have a choice whether to join the study
Getting informed consent can take a long time, and people may not understand all the details. Researchers want to know what patients think about having short or longer discussions with doctors for studies with low risk. Low risk means the study's risks are no greater than those in daily life or from usual health care. In this study, the research team compared people's views about a shorter consent discussion for a study on blood pressure with the usual, longer discussion.
Euro-barometer 39.1: Energy Policies, Biotechnology, and Genetic Engineering, May-June 1993 (ICPSR 6196)
Eurobarometer 73.1: The European Parliament, Biotechnology, and Science and Technology, January-February 2010 (ICPSR 31483)
The Eurobarometer series is a unique cross-national and cross-temporal survey program conducted on behalf of the European Commission. These surveys regularly monitor public opinion in the European Union (EU) member countries and consist of standard modules and special topic modules. The standard modules address attitudes towards European unification, institutions and policies, measurements for general socio-political orientations, as well as respondent and household demographics. The special topic modules address such topics as agriculture, education, natural environment and resources, public health, public safety and crime, and science and technology.
This round of Eurobarometer surveys covers: (1) knowledge, opinions of, policies, and values of the European Parliament (EP); (2) biotechnology; (3) science and technology. Technology questions pertain to knowledge, opinions, and effects of genetically modified food, nanotechnology, animal clothing, synthetic biology, and biobanks emerging in the next 20 years, as well as opinions on regenerative medicine, including stem cell research, resistance genes, bio-fuels, and global warming. Other questions address interest in, knowledge of, and engagement with science and technology, collaborative research across Europe funded by the EU, level of EU investment in research, young people's interest in science, and women's representation in scientific professions.
Demographic and other background information collected includes age, gender, nationality, marital status, age when stopped full-time education, occupation, left-right political self-placement, political party attachment, household composition, religious affiliation and participation, ownership of a fixed or a mobile telephone and other durable goods, difficulties paying bills, level in society, and Internet use. In addition, country-specific data includes type and size of locality, region of residence, and language of interview (select countries).
Health Tracking Physician Survey, 2008 [United States] (ICPSR 27202)
National Survey of the Public's Moral Concerns about Biobank Research, [United States], 2014 (ICPSR 37179)
Patient-Centered Enrollment in Comparative Effectiveness Trials: Mathematical Equipoise [Methods Study], Massachusetts, 2013-2018 (ICPSR 39483)
Comparative effectiveness research compares two or more treatments to see which one works better for certain patients. This research may include randomized controlled trials, or RCTs, in which researchers assign patients to one of the treatments by chance.
A patient may enroll in an RCT when, based on current knowledge of that patient's traits, the treatments being tested have about the same chance of helping. If one treatment is known to have a better chance of helping a patient, then the patient would not enroll and would receive that treatment from the doctor.
Sometimes there isn't enough research to show if one treatment has a better chance of helping than another. In this case, researchers may use computer programs. The programs estimate how well different treatments work in patients with certain traits. For example, a person's age and pain level may affect how much a treatment helps.
These programs would be useful for patients with knee osteoarthritis. Not many RCTs have compared total knee replacement surgery with other treatments such as medicine or physical therapy.
In this study, the research team made a computer program for patients with knee osteoarthritis. It uses data from electronic health records. The program could help identify patients for whom
- The treatments in the study have about the same chance of helping. These patients may wish to take part in an RCT.
- A certain treatment may help more than another. These patients could choose that treatment.
The research team also made an online system based on the program for patients and doctors to use during a visit. Doctors can use the results from the system to talk with patients about treatment. If appropriate, they could talk about taking part in an RCT.
Preventing Ethical Disasters in the Practice of Medicine, United States, 2008-2016 (ICPSR 38314)
Researchers researched and analyzed 280 cases of serious wrongdoing in medicine involving three kinds of violations: improper prescribing of controlled substances (IPCS), sexual abuse of patients (SAP), and unnecessary invasive procedures (UIP). They focused on these three types of wrongdoing because each is traumatizing to patients, causing physical and emotional harm, financial loss, and sometimes death. They are often the cause of major disciplinary actions by medical boards.
The methodological approach involved identifying potential cases of serious wrongdoing through systematic literature reviews of court records, medical boards reports, newspaper articles, and online materials for each case. Using a detailed codebook, researchers performed descriptive coding of the literature and used a criminal law framework to identify the salient individual and environmental factors that predicted motive, means, and opportunity (MMO) for each case. Within each of the three types of wrongdoing, they identified typologies of cases using qualitative analysis.
Finally, researchers held a working group meeting with experts to reach a consensus on how findings can inform medical education, policies, and oversight practices to reduce the rates and the duration of serious wrongdoing.
Research Ethics in Patient-Centered Outcomes Research (PCOR) [Methods Study], United States, 2015-2019 (ICPSR 39567)
Patient-centered outcomes research, or PCOR, is a type of research that focuses on patient values and needs. PCOR includes patients in many parts of the research process, including helping to plan and conduct the study. Institutional Review Boards, or IRBs, oversee research studies to make sure patients participating in a study are protected from harm. But current IRB guidance may not address ethical issues that arise when patients are involved in other roles.
In this study, the research team created recommendations to guide IRB oversight of PCOR studies.
The Vermont Study on Aid-in-Dying, 2016-2018 (ICPSR 37209)
Legislative support for physician aid-in-dying (PAD) in the US has risen steadily in recent years. In May 2013, Vermont became the fourth state to legalize PAD, through the "Patient Choice and Control at End of Life" Act (Act 39). The law authorized physicians to prescribe a lethal dose of medication to a mentally competent, terminally ill, adult patient for the purpose of ending the patient's life. With ongoing legislative activities in many other states, these laws are expected to spread nationally. This shifting legislative climate raises questions about how societies respond to changes in the sociocultural and biopolitical organization of death. While social scientists have examined the social and political forces that shape 'right to die' movements and counter-movements, sanctioning the right to die is only the first step in institutionalizing PAD as a new cultural and medical practice. What happens once these rights are legally authorized?
The purpose of this study was to learn about how people in Vermont have been affected by Act 39. This 2-year ethnographic study (July 2016-June 2018) addressed the following overarching research questions:
- How do ordinary people understand, access, experience, and contest the 'right to die' through PAD once it has been granted?
- How do healthcare providers and policy stakeholders accommodate or resist PAD as a new end-of-life practice?
- How does PAD affect the cultural landscape of care for the dying in the US?
Due to the recent enactment of Act 39, and Vermont's small size and the geographic proximity of key institutions, Vermont offered an ideal setting to explore these questions and document emergent responses to a new socio-legal phenomenon across multiple sites. By tracing the social life of Act 39 from the Vermont State House to the institutions, experts, and ordinary people responsible for managing death, this study yielded valuable information about the broad sociocultural consequences of legalizing PAD, including unintended consequences, that will be relevant to US policymakers, clinicians, patients, and families.
This collection includes semi-structured interviews with seriously ill Vermont patients, survivors of people who have used Act 39, healthcare providers and administrators, activists, and legislators, as well as participant observation in settings in which PAD is likely to be discussed. Participants were asked about their personal and professional backgrounds, attitudes on death and the legalization of PAD, understandings of the physician's role and responsibilities regarding end-of-life care, and interactions between healthcare providers, patients, and caregivers about PAD. The age, gender, and race of the participants are also provided.