Alternatives to project-specific consent for access to personal information for health research: Insights from a public dialogue

<p>Abstract</p> <p>Background</p> <p>The role of consent for research use of health information is contentious. Most discussion has focused on when project-specific consent may be waived but, recently, a broader range of consent options has been entertained, including broad opt-in for multiple studies with restrictions and notification with opt-out. We sought to elicit public values in this matter and to work toward an agreement about a common approach to consent for use of personal information for health research through deliberative public dialogues.</p> <p>Methods</p> <p>We conducted seven day-long public dialogues, involving 98 participants across Canada. Immediately before and after each dialogue, participants completed a fixed-response questionnaire rating individuals' support for 3 approaches to consent in the abstract and their consent choices for 5 health research scenarios using personal information. They also rated how confident different safeguards made them feel that their information was being used responsibly.</p> <p>Results</p> <p>Broad opt-in consent for use of personal information garnered the greatest support in the abstract. When presented with specific research scenarios, no one approach to consent predominated. When profit was introduced into the scenarios, consent choices shifted toward greater control over use. Despite lively and constructive dialogues, and considerable shifting in opinion at the individual level, at the end of the day, there was no substantive aggregate movement in opinion. Personal controls were among the most commonly cited approaches to improving people's confidence in the responsible use of their information for research.</p> <p>Conclusion</p> <p>Because no one approach to consent satisfied even a simple majority of dialogue participants and the importance placed on personal controls, a mechanism should be developed for documenting consent choice for different types of research, including ways for individuals to check who has accessed their medical record for purposes other than clinical care. This could be done, for example, through a web-based patient portal to their electronic health record. Researchers and policy makers should continue to engage the public to promote greater public understanding of the research process and to look for feasible alternatives to existing approaches to project-specific consent for observational research.</p

Large expert-curated database for benchmarking document similarity detection in biomedical literature search

Document recommendation systems for locating relevant literature have mostly relied on methods developed a decade ago. This is largely due to the lack of a large offline gold-standard benchmark of relevant documents that cover a variety of research fields such that newly developed literature search techniques can be compared, improved and translated into practice. To overcome this bottleneck, we have established the RElevant LIterature SearcH consortium consisting of more than 1500 scientists from 84 countries, who have collectively annotated the relevance of over 180 000 PubMed-listed articles with regard to their respective seed (input) article/s. The majority of annotations were contributed by highly experienced, original authors of the seed articles. The collected data cover 76% of all unique PubMed Medical Subject Headings descriptors. No systematic biases were observed across different experience levels, research fields or time spent on annotations. More importantly, annotations of the same document pairs contributed by different scientists were highly concordant. We further show that the three representative baseline methods used to generate recommended articles for evaluation (Okapi Best Matching 25, Term Frequency-Inverse Document Frequency and PubMed Related Articles) had similar overall performances. Additionally, we found that these methods each tend to produce distinct collections of recommended articles, suggesting that a hybrid method may be required to completely capture all relevant articles. The established database server located at https://relishdb.ict.griffith.edu.au is freely available for the downloading of annotation data and the blind testing of new methods. We expect that this benchmark will be useful for stimulating the development of new powerful techniques for title and title/abstract-based search engines for relevant articles in biomedical research.Peer reviewe

Electrocardiographic changes associated with isolated right ventricular infarction

Isolated infarction of the right ventricle is an extremely rare entity. A patient is described with diffuse interstitial lung disease who developed ST segment elevation in inferior and anterior leads on a routine electrocardiogram and at autopsy was found to have an isolated right ventricular infarct involving approximately 70% of the right ventricular circumference without involvement of the left ventricle and septum. This case illustrates that isolated right ventricular infarction in the presence of cor pulmonale and right ventricular hypertrophy can produce an injury current in the limb and precordial leads of the electrocardiogram which mimics that seen in typical transmural infarction of the left ventricle

Improving risk factor identification for opioid overdose deaths in Tennessee

ObjectiveTo examine specific drugs present based on postmortem toxicology for prescription opioid, heroin, and fentanyl overdoses classified based on ICD-10 coding. To compare drugs identified from postmortem toxicology with those listed on the death certificate for opioid overdoses.IntroductionUsing death certificates alone to identify contributing substances in drug overdose deaths may result in misclassification and underestimation of the burden of illicit and prescription opioids and other drugs in drug-related deaths. To enable timely and targeted prevention in Tennessee (TN), the identification and monitoring of new drugs and trends in use should utilize toxicology and medicolegal death investigation data directly, as recommended by others 1-3. These data can inform mortality outcome definitions for improved surveillance and risk factor identification 4-7. To our knowledge, this is the first analysis to use statewide linked toxicology and death certificate data in TN.MethodsWe identified 615 opioid involved overdose deaths in TN of unintentional (underlying ICD-10 codes: X40-X44) or undetermined (underlying ICD-10 codes: Y10-Y14) intent during June 1st to December 31st 2017. Utilizing the Interim Medical Examiner Database (I-MED), we identified postmortem toxicology reports for 454 cases, which were from one of three national laboratories used by a state Regional Forensic Center. Toxicology data were abstracted and independently verified by two co-authors and linked to the TN death statistical file that included cause of death information (literal text and ICD-10 codes) and demographics. The analysis focuses on cases with an available toxicology report.ResultsWe identified 171 prescription opioid overdoses, 221 fentanyl overdoses, and 113 heroin overdoses. Table 1 displays postmortem toxicology profiles for major drugs/classes. For prescription opioid deaths (excluding fentanyl and heroin), positive toxicology results for prescription opioids were as follows: methadone (11%), buprenorphine (14%), hydrocodone (14%), oxycodone (36%) and oxymorphone (also a metabolite, 47%). Benzodiazepines were present in close to 58% of prescription opioid overdoses; stimulants (cocaine, amphetamines, methamphetamines) in about 25%. For fentanyl and heroin deaths, prescription opioids were detected in about 26% and 34%, respectively; stimulants in about 57.9% and 52.2%, respectively, and benzodiazepines 36-37%. Fentanyl was present on toxicology in about half of heroin overdoses, and 6–monoacetylmorphine in 72.6%.ConclusionsUsing medical examiners’ data, including toxicology data, improves estimation of contributing drugs involved in opioid deaths. This analysis provides jurisdiction-specific data on drugs that can help with monitoring trends and informs risk factor identification. Future work includes adding information on prescribed opioid and benzodiazepines using TN’s Prescription Drug Monitoring Database and evaluating demographic variation in contributing drugs between toxicology and DC data to identify susceptible populations.References1. Slavova S, O'Brien DB, Creppage K, Dao D, Fondario A, Haile E, Hume B, Largo TW, Nguyen C, Sabel JC, Wright D, Council of S, Territorial Epidemiologists Overdose S. Drug Overdose Deaths: Let's Get Specific. Public Health Rep.2. Horon IL, Singal P, Fowler DR, Sharfstein JM. Standard Death Certificates Versus Enhanced Surveillance to Identify Heroin Overdose-Related Deaths. Am J Public Health. 2018;108(6):777-81.3. Mertz KJ, Janssen JK, Williams KE. Underrepresentation of heroin involvement in unintentional drug overdose deaths in Allegheny County, PA. J Forensic Sci. 2014;59(6):1583-5.4. Landen MG, Castle S, Nolte KB, Gonzales M, Escobedo LG, Chatterjee BF, Johnson K, Sewell CM. Methodological issues in the surveillance of poisoning, illicit drug overdose, and heroin overdose deaths in new Mexico. Am J Epidemiol. 2003;157(3):273-8.5. Davis GG, National Association of Medical E, American College of Medical Toxicology Expert Panel on E, Reporting Opioid D. Complete republication: National Association of Medical Examiners position paper: Recommendations for the investigation, diagnosis, and certification of deaths related to opioid drugs. J Med Toxicol. 2014;10(1):100-6.6. Slavova S, Bunn TL, Hargrove SL, Corey T. Linking Death Certificates, Postmortem Toxicology, and Prescription History Data for Better Identification of Populations at Increased Risk for Drug Intoxication Deaths. Pharmaceutical Medicine. 2017;31(3):155-65.7. Hurstak E, Rowe C, Turner C, Behar E, Cabugao R, Lemos NP, Burke C, Coffin P. Using medical examiner case narratives to improve opioid overdose surveillance. Int J Drug Policy. 2018;54:35-42.