The use of personal health information outside the circle of care: consent preferences of patients from an academic health care institution.
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ABSTRACT: Background
Immense volumes of personal health information (PHI) are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences.Methods
Patients were invited to complete a 27-item survey focusing on: (a) broad versus specific consent; (b) opt-in versus opt-out approaches; (c) comfort level sharing with different recipients; (d) attitudes towards commercialization; and (e) options to track PHI use and study results.Results
222 participants were included in the analysis; 83% were comfortable sharing PHI with researchers at their own hospital, although younger patients (≤ 49 years) were more uncomfortable than older patients (50 + years; 13% versus 2% uncomfortable, p < 0.05). While 56% of patients preferred broad consent, 38% preferred specific consent; 6% preferred not sharing at all. The majority of patients (63%) preferred to be asked for permission before entry into a contact pool. Again, this trend was more pronounced for younger patients (≤ 49 years: 76%). Approximately half of patients were uncomfortable sharing PHI with commercial enterprises (51% uncomfortable, 27% comfortable, 22% neutral). Most patients preferred to track PHI usage (61%), with the highest proportion once again reported by the youngest patients (≤ 49 years: 71%). A majority of patients also wished to be notified regarding study results (70%).Conclusions
While most patients were willing to share their PHI with researchers within their own institution, many preferred a transparent and reciprocal consent process. These data also suggest a generational shift, wherein younger patients preferred more specific consent options. Modernizing consent policies to reflect increased autonomy is crucial in fostering sustained public engagement with medical research.
SUBMITTER: Tosoni S
PROVIDER: S-EPMC7992944 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundRapid ethical access to personal health information (PHI) to support research is extremely important during pandemics, yet little is known regarding patient preferences for consent during such crises. This follow-up study sought to ascertain whether there were differences in consent preferences between pre-pandemic times compared to during Wave 1 of the COVID-19 global pandemic, and to better understand the reasons behind these preferences.MethodsA total of 183 patients in the pandemic cohort completed the survey via email, and responses were compared to the distinct pre-pandemic cohort (n = 222); all were patients of a large Canadian cancer center. The survey covered (a) broad versus study-specific consent; (b) opt-in versus opt-out contact approach; (c) levels of comfort sharing with different recipients; (d) perceptions of commercialization; and (e) options to track use of information and be notified of results. Four focus groups (n = 12) were subsequently conducted to elucidate reasons motivating dominant preferences.ResultsPatients in the pandemic cohort were significantly more comfortable with sharing all information and biological samples (90% vs. 79%, p = 0.009), sharing information with the health care institution (97% vs. 83%, p < 0.001), sharing information with researchers at other hospitals (85% vs. 70%, p < 0.001), sharing PHI provincially (69% vs. 53%, p < 0.002), nationally (65% vs. 53%, p = 0.022) and internationally (48% vs. 39%, p = 0.024) compared to the pre-pandemic cohort. Discomfort with sharing information with commercial companies remained unchanged between the two cohorts (50% vs. 51% uncomfortable, p = 0.58). Significantly more pandemic cohort patients expressed a wish to track use of PHI (75% vs. 61%, p = 0.007), and to be notified of results (83% vs. 70%, p = 0.012). Thematic analysis uncovered that transparency was strongly desired on outside PHI use, particularly when commercialization was involved.ConclusionsIn pandemic times, patients were more comfortable sharing information with all parties, except with commercial entities, where levels of discomfort (~ 50%) remained unchanged. Focus groups identified that the ability to track and receive results of studies using one's PHI is an important way to reduce discomfort and increase trust. These findings meaningfully inform wider discussions on the use of personal health information for research during global crises.
| S-EPMC9122733 | biostudies-literature
Project description:IntroductionWhile there have been several studies examining the understanding and quality of informed consent in clinical trials of cancer therapies, there is limited empirical research on health practitioners' experiences on the informed consent process in cancer care, especially from low resource settings. This study explored health professionals' perspectives on information disclosure during the consenting process in cancer care.MethodsA qualitative descriptive approach was used to collect data. Face to face interviews were conducted with 10 purposively selected healthcare professionals who were actively involved in soliciting informed consent at a cancer treatment centre in Uganda. A thematic approach was used to interpret the results.ResultsThere were five key themes, and these included information disclosure to patients; assessment of patients' cancer awareness, treatment preferences and expectations; informed consent practices; barriers to optimal informed consent and information disclosure; and recommendations for improving the consenting process. All respondents appreciated the value of disclosing accurate information to patients to facilitate informed decision making. However, the informed consent process was deemed sub-optimal. Respondents asserted that patients should be the psychological wellbeing of patients should be protected by mentally preparing them before disclosing potentially distressing information. All healthcare professionals were appreciative of the central role the family plays in the consenting process.ConclusionOverall, informed consent practices were not ideal because of the several challenges. Inadequate time is devoted to information disclosure and patient education; there is lack of privacy; and informed consent documentation is poor. There is a need for significant improvement in informed consent practices and healthcare professional-patient communication.
| S-EPMC10994281 | biostudies-literature
Project description:BackgroundThe 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.MethodsWe 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.ResultsBroad 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.ConclusionBecause 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.
| S-EPMC2601042 | biostudies-literature
Project description:Cancer patients' preferences for written prognostic information independent of the clinical context have not previously been investigated. This study aimed to assist a state cancer organisation to provide information to patients by assessing patients' understanding of statistical information; eliciting their preferences for framing, content and presentation; and assessing the acceptability of a card sort for obtaining preferences. With the exception of conditional and relative survival, initial difficulties in understanding statistical concepts were improved with a plain language explanation. Analysis of the interview transcripts revealed that participants generally supported the provision of written information about survival in booklets and on the Internet. They wanted positive, relevant and clear information. Participants said that the use of, and preferences for, this information would be affected by a patient's age, time since diagnosis, ability to cope with having cancer and the perceived credibility of the information source. They found the card sort acceptable, saying it made the assessment of understanding and selection of preferences easy. This study has identified two fundamental, and sometimes conflicting, factors underlying patients' preferences: the communication of hope and the need to understand information it has also identified patient characteristics thought to influence preferences. These factors and characteristics need to be taken into account when developing written prognostic information for patients.
| S-EPMC2394356 | biostudies-other
Project description:ObjectivesHealth care professionals regularly struggle with issues relating to confidentiality and consent for physical and/or mental health issues among adolescents. We investigate late adolescents' own and assumed parental preferences towards health-care related confidentiality and consent.MethodsWe analyzed online survey data of four vignettes from 463 first-year university students at KU Leuven (Flanders, Belgium). We used paired samples t-tests to assess the (in)consistency between attitudes of late adolescents and their assumed parental attitudes, independent samples t-tests to estimate gender differences, and binomial logistic regressions to analyze the association of assumed parental preferences with late adolescents' own preferences.ResultsAttitudinal inconsistencies were present in all vignettes. Late adolescents were significantly more in favor of confidentiality and adolescent consent than what they believed their parents were. Gender differences were limited. Binomial logistic regressions indicated that assumed parental preferences were strongly associated with late adolescents' own preferences.ConclusionsFindings suggest a clear difference between late adolescents' preferences and assumed parental preferences: they believe that their parents are less inclined to favor confidentiality and adolescent consent. We also find that this difference depends on the case, indicating that there is no such thing as general 'confidentiality preferences'. Rather, a decision- and/or context-specific perspective should be adopted.
| S-EPMC8171959 | biostudies-literature
Project description:ObjectiveTo assess whether electronic health information exchange (HIE) is associated with improved emergency department (ED) care processes and utilization through more timely clinician viewing of information from outside organizations.Materials and methodsOur data included 2163 patients seen in the ED of a large academic medical center for whom clinicians requested and viewed outside information from February 14, 2014, to February 13, 2015. Outside information requests w.ere fulfilled via HIE (Epic's Care Everywhere) or fax/scan to the electronic health record (EHR). We used EHR audit data to capture the time between the information request and when a clinician accessed the data. We assessed whether the relationship between method of information return and ED outcomes (length of visit, odds of imaging [computed tomography (CT), magnetic resonance imaging (MRI), radiographs] and hospitalization, and total charges) was mediated by request-to-access time, controlling for patient demographics, case mix, and acuity.ResultsIn multivariate analysis, there was no direct association between return of information via HIE vs fax/scan and ED outcomes. HIE was associated with faster outside information access (58.5 minutes on average), and faster access was associated with changes in ED care. For each 1-hour reduction in access time, visit length was 52.9 minutes shorter, the likelihood of imaging was lower (by 2.5, 1.6, and 2.4 percentage points for CT, MRI, and radiographs, respectively), the likelihood of admission was 2.4 percentage points lower, and average charges were $1187 lower ( P ≤ .001 for all).ConclusionThe relationship between HIE and improved care processes and reduced utilization in the ED is mediated by faster accessing of information from outside organizations.
| S-EPMC7651934 | biostudies-literature
Project description:BackgroundIn studies publishing identifying personal information, obtaining consent is regarded as necessary, as it is impossible to ensure complete anonymity. However, current journal practices around specific points to consider when obtaining consent, the contents of consent forms and how consent forms are managed have not yet been fully examined. This study was conducted to identify potential issues surrounding consent to publish identifying personal information.MethodsContent analysis was carried out on instructions for authors and consent forms developed by academic journals in four fields (as classified by Journal Citation Reports): medicine general and internal, genetics and heredity, pediatrics, and psychiatry. An online questionnaire survey of editors working for journals that require the submission of consent forms was also conducted.ResultsInstructions for authors were reviewed for 491 academic journals (132 for medicine general and internal, 147 for genetics and heredity, 100 for pediatrics, and 112 for psychiatry). Approximately 40% (203: 74 for medicine general and internal, 31 for genetics and heredity, 58 for pediatrics, and 40 for psychiatry) stated that subject consent was necessary. The submission of consent forms was required by 30% (154) of the journals studied, and 10% (50) provided their own consent forms for authors to use. Two journals mentioned that the possible effects of publication on subjects should be considered. Many journal consent forms mentioned the difficulties in ensuring complete anonymity of subjects, but few addressed the study objective, the subjects' right to refuse consent and the withdrawal of consent. The main reason for requiring the submission of consent forms was to confirm that consent had been obtained.ConclusionApproximately 40% of journals required subject consent to be obtained. However, differences were observed depending on the fields. Specific considerations were not always documented. There is a need to address issues around the study objective, subjects' right to refuse consent and the withdrawal of consent. Whether responsibility for ensuring that the consent form has been signed lies with publishers also needs to be discussed.
| S-EPMC4222768 | biostudies-literature
Project description:BackgroundStigma refers to a distinguishing personal trait that is perceived as or actually is physically, socially, or psychologically disadvantageous. Little is known about the opinion of those who have more or less stigmatizing health conditions regarding the need for consent for use of their personal information for health research.MethodsWe surveyed the opinions of people 18 years and older with seven health conditions. Participants were drawn from: physicians' offices and clinics in southern Ontario; and from a cross-Canada marketing panel of individuals with the target health conditions. For each of five research scenarios presented, respondents chose one of five consent choices: (1) no need for me to know; (2) notice with opt-out; (3) broad opt-in; (4) project-specific permission; and (5) this information should not be used. Consent choices were regressed onto: demographics; health condition; and attitude measures of privacy, disclosure concern, and the benefits of health research. We conducted focus groups to discuss possible reasons for observed consent choices.ResultsWe observed substantial variation in the control that people wish to have over use of their personal information for research. However, consent choice profiles were similar across health conditions, possibly due to sampling bias. Research involving profit or requiring linkage of health information with income, education, or occupation were associated with more restrictive consent choices. People were more willing to link their health information with biological samples than with information about their income, occupation, or education.ConclusionsThe heterogeneity in consent choices suggests individuals should be offered some choice in use of their information for different types of health research, even if limited to selectively opting-out. Some of the implementation challenges could be designed into the interoperable electronic health record. However, many questions remain, including how best to capture the opinions of those who are more privacy sensitive.
| S-EPMC2724473 | biostudies-literature
Project description:BackgroundHealth care professionals (HCPs) routinely have questions concerning the medications they are recommending. There are numerous resources available; however, each has its own advantages and disadvantages.ObjectiveThe purpose of this survey was to gain knowledge of the preferred methods and sources HCPs use to obtain information concerning medications.MethodsA total of 511 HCPs (202 physicians, 105 pharmacists, 100 advance practice nurses, 53 registered nurses, and 51 physician assistants) were surveyed through a third-party market research firm. All participants were practicing in the United States. Individuals working for a pharmaceutical company were excluded. The survey collected demographics, frequency of searching medical information, types of questions searched, sources of medical information, and rationale for preferred and nonpreferred sources of medical information. Use of medical information resources were rated on a 5-point ordinal scale. Data were analyzed with descriptive statistics.ResultsOf the 511 respondents, 88.5% (452/511) searched for medical information either daily or several times per week. The most common questions involved dosing and administration, drug-drug interactions, adverse events and safety, clinical practice guidelines, and disease state information. The main rationale for using specific medical websites or apps and general online search engines frequently or very frequently was ease of use (medical websites or apps: 269/356, 75.6%; general online search engines: 248/284, 87.3%). Accuracy was the main rationale for frequent or very frequent use of medical literature search databases (163/245, 66.5%), prescribing labels or information (122/213, 57.3%), and professional literature (120/195, 61.5%). The main reason for rarely or never using specific medical websites or apps and medical literature search databases was unfamiliarity (medical websites or apps: 16/48, 33%; medical literature search databases: 35/78, 45%); for general online search engines, inaccuracy (34/54, 63%); and for prescribing labels or information and professional literature, excessive time (prescribing labels or information : 54/102, 52.9%; professional literature: 66/106, 62.3%). The pharmaceutical company was sometimes used as a resource for medical information. When the medical information department was used, the call center and the website were considered thorough and complete (call center: 14/25, 56%; website: 33/55, 60%). However, the rationale for not using the call center was the time required (199/346, 57.5%) and the website being unfamiliar (129/267, 48.3%).ConclusionsThe driving forces in the selection of resources are accuracy and ease of use. There is an opportunity to increase awareness of all the appropriate resources for HCPs which may aid in their daily clinical decisions. Specifically, pharmaceutical company medical information departments can help fulfill this need by addressing two major challenges with use of the pharmaceutical company: lack of awareness of medical information services and the speed at which responses are disseminated. Overall, there is lack of understanding or appreciation of the range of pathways to obtain published information and knowledge from pharmaceutical company medical information services. Among the many challenges resource champions will face are the ability to effectively make resources and their platforms accessible, known, and useful to the scientific community.
| S-EPMC8386376 | biostudies-literature
Project description:Personalized genomic risk information has the potential to motivate behaviour change and promote population health, but the success of this will depend upon effective risk communication strategies.To determine preferences for different graphical and written risk communication formats, and the delivery of genomic risk information including the mode of communication and the role of health professionals.Focus groups, transcribed and analysed thematically.Thirty-four participants from the public.Participants were provided with, and invited to discuss, a hypothetical scenario giving an individual's personalized genomic risk of melanoma displayed in several graphical formats.Participants preferred risk formats that were familiar and easy to understand, such as a 'double pie chart' and '100 person diagram' (pictograph). The 100 person diagram was considered persuasive because it humanized and personalized the risk information. People described the pie chart format as resembling bank data and food (such as cake and pizza). Participants thought that email, web-based platforms and postal mail were viable options for communicating genomic risk information. However, they felt that it was important that a health professional (either a genetic counsellor or 'informed' general practitioner) be available for discussion at the time of receiving the risk information, to minimize potential negative emotional responses and misunderstanding. Face-to-face or telephone delivery was preferred for delivery of high-risk results.These public preferences for communication strategies for genomic risk information will help to guide translation of genome-based knowledge into improved population health.
| S-EPMC5139046 | biostudies-literature