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Item Designing a System for Patients Controlling Providers’ Access to their Electronic Health Records: Organizational and Technical Challenges(Springer, 2015-01) Leventhal, Jeremy C.; Cummins, Jonathan A.; Schwartz, Peter H.; Martin, Douglas K.; Tierney, William M.; Department of Medicine, IU School of MedicineBACKGROUND Electronic health records (EHRs) are proliferating, and financial incentives encourage their use. Applying Fair Information Practice principles to EHRs necessitates balancing patients’ rights to control their personal information with providers’ data needs to deliver safe, high-quality care. We describe the technical and organizational challenges faced in capturing patients’ preferences for patient-controlled EHR access and applying those preferences to an existing EHR. METHODS We established an online system for capturing patients’ preferences for who could view their EHRs (listing all participating clinic providers individually and categorically—physicians, nurses, other staff) and what data to redact (none, all, or by specific categories of sensitive data or patient age). We then modified existing data-viewing software serving a state-wide health information exchange and a large urban health system and its primary care clinics to allow patients’ preferences to guide data displays to providers. RESULTS Patients could allow or restrict data displays to all clinicians and staff in a demonstration primary care clinic, categories of providers (physicians, nurses, others), or individual providers. They could also restrict access to all EHR data or any or all of five categories of sensitive data (mental and reproductive health, sexually transmitted diseases, HIV/AIDS, and substance abuse) and for specific patient ages. The EHR viewer displayed data via reports, data flowsheets, and coded and free text data displayed by Google-like searches. Unless patients recorded restrictions, by default all requested data were displayed to all providers. Data patients wanted restricted were not displayed, with no indication they were redacted. Technical barriers prevented redacting restricted information in free textnotes. The program allowed providers to hit a “Break the Glass” button to override patients’ restrictions, recording the date, time, and next screen viewed. Establishing patient-control over EHR data displays was complex and required ethical, clinical, database, and programming expertise and difficult choices to overcome technical and health system constraints. CONCLUSIONS Assessing patients’ preferences for access to their EHRs and applying them in clinical practice requires wide-ranging technical, clinical, and bioethical expertise, to make tough choices to overcome significant technical and organization challenges.Item How Bioethics Principles Can Aid Design of Electronic Health Records to Accommodate Patient Granular Control(Springer, 2015) Meslin, Eric M.; Schwartz, Peter H.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.Item Patient preferences in retinal drug delivery(Nature, 2021) Jacobs, Brandon; Palmer, Nicholas; Shetty, Trupti; Dimaras, Helen; Hajrasouliha, Amir; Jusufbegovic, Denis; Corson, Timothy W.; Ophthalmology, School of MedicineRetinal vascular diseases (RVDs) are often treated with intravitreally (IVT) injected drugs, with relatively low patient compliance and potential risks. Ongoing research explores alternative RVD treatments, including eye drops and oral tablets. This study surveyed RVD patients treated with IVT injections to establish factors influencing low compliance rates while gauging treatment delivery method preferences. Demographics, perspectives, and treatment preferences were collected via IRB-approved, self-administered survey sent to Glick Eye Institute patients treated via IVT injections. Demographics, diagnoses, and treatments were ascertained from respondents’ medical records. Gender, age, and number of IVT injections received were used as stratifications. Five-level Likert-style scales and t-tests evaluated responses and stratification comparisons. The most common diagnoses in the respondent population (n = 54; response rate = 5%) were age-related macular degeneration, macular edema, and diabetic retinopathy. Respondents had varying levels of education, income, and age. Most (83%) admitted feeling anxious prior to their first IVT injection, but 80% reported willingness to receive IVT injections indefinitely, with a preference for ophthalmologist visits every 1–3 months. Eye drops would be preferred over IVT injections by 76% of respondents, while 65% preferred oral tablets, due to several perceived negative factors of IVT injections and positive factors for eye drops. Stratified groups did not differ in responses to survey questions. RVD patients will accept IVT injections for vision preservation, but alternative delivery methods like eye drops or oral tablets would be preferred. Thus, development of eye drop and oral therapeutics for RVD treatment is further emphasized by these findings.Item Provider Beliefs, Practices, and Perceived Barriers to Dietary Elimination Therapy in Eosinophilic Esophagitis(Wolters Kluwer, 2022-09-01) Chang, Joy W.; Kliewe, Kara; Katzka, David A.; Peterson, Kathryn A.; Gonsalves, Nirmala; Gupta, Sandeep K.; Furuta, Glenn T.; Dellon, Evan S.; Pediatrics, School of MedicineINTRODUCTION: Despite effective dietary treatments, physicians prefer medications for eosinophilic esophagitis (EoE). METHODS: We conducted a web-based survey of providers to assess the perceived effectiveness, practice patterns, and barriers to EoE dietary therapy. RESULTS: Providers view diet as the least effective treatment. The greatest barrier was the belief that patients are disinterested and unlikely to adhere (58%). With less access to dietitians (56%), non-academic providers often manage diets without dietitian guidance (41%). CONCLUSIONS: Given high patient acceptance for diets and multiple treatment options for EoE, clinicians need evidence-based knowledge on EoE diets, access to dietitians, and awareness of patient preferences.Item Provider Responses to Patients Controlling Access to their Electronic Health Records: A Prospective Cohort Study in Primary Care(Springer, 2015) Tierney, William M.; Alpert, Sheri A.; Byrket, Amy; Caine, Kelly; Leventhal, Jeremy C.; Meslin, Eric M.; Schwartz, Peter H.; Department of Medicine, IU School of MedicineIntroduction: Applying Fair Information Practice principles to electronic health records (EHRs) requires allowing patient control over who views their data. Methods: We designed a program that captures patients’ preferences for provider access to an urban health system’s EHR. Patients could allow or restrict providers’ access to all data (diagnoses, medications, test results, reports, etc.) or only highly sensitive data (sexually transmitted infections, HIV/AIDS, drugs/alcohol, mental or reproductive health). Except for information in free-text reports, we redacted EHR data shown to providers according to patients’ preferences. Providers could “Break the Glass” to display redacted information. We prospectively studied this system in one primary care clinic, noting redactions and when users “Broke the Glass,” and surveyed providers about their experiences and opinions. Results: Eight of 9 eligible clinic physicians and all 23 clinic staff participated. All 105 patients who enrolled completed the preference program.. Providers did not know which of their patients were enrolled and nor their preferences for accessing their EHRs. During the six-month prospective study, 92 study patients (88%) returned 261 times during which providers viewed their EHRs 126 times (48%). Providers “broke the glass” 102 times, 92 times for patients not in the study and 10 times for 6 returning study patients, all of whom had restricted EHR access. Providers “broke the glass” for 6 (14%) of 43 returning study patients with redacted data vs. zero among 49 study patients without redactions (p=0.01). Although 54% of providers agreed that patients should have control over who sees their EHR information, 58% believed restricting EHR access could harm provider-patient relationships and 71% felt quality of care would suffer. Conclusions: Patients frequently preferred restricting provider access to their EHRs. Providers infrequently overrode patients’ preferences to view hidden data. Providers believed restricting EHR access would adversely impact patient care. Applying Fair Information Practice principles to EHRs will require balancing patient preferences, providers’ needs, and health care quality.Item What Patients Want to Know about Imaging Examinations: A Multiinstitutional U.S. Survey in Adult and Pediatric Teaching Hospitals on Patient Preferences for Receiving Information before Radiologic Examinations(RSNA, 2018) Pahade, Jay K.; Trout, Andrew T.; Zhang, Bin; Bhambhvani, Pradeep; Muse, Victorine V.; Delaney, Lisa R.; Zucker, Evan J.; Pandharipande, Pari V.; Brink, James A.; Goske, Marilyn J.; Radiology and Imaging Sciences, School of MedicinePurpose To identify what information patients and parents or caregivers found useful before an imaging examination, from whom they preferred to receive information, and how those preferences related to patient-specific variables including demographics and prior radiologic examinations. Materials and Methods A 24-item survey was distributed at three pediatric and three adult hospitals between January and May 2015. The χ2 or Fisher exact test (categorical variables) and one-way analysis of variance or two-sample t test (continuous variables) were used for comparisons. Multivariate logistic regression was used to determine associations between responses and demographics. Results Of 1742 surveys, 1542 (89%) were returned (381 partial, 1161 completed). Mean respondent age was 46.2 years ± 16.8 (standard deviation), with respondents more frequently female (1025 of 1506, 68%) and Caucasian (1132 of 1504, 75%). Overall, 78% (1117 of 1438) reported receiving information about their examination most commonly from the ordering provider (824 of 1292, 64%), who was also the most preferred source (1005 of 1388, 72%). Scheduled magnetic resonance (MR) imaging or nuclear medicine examinations (P < .001 vs other examination types) and increasing education (P = .008) were associated with higher rates of receiving information. Half of respondents (757 of 1452, 52%) sought information themselves. The highest importance scores for pre-examination information (Likert scale ≥4) was most frequently assigned to information on examination preparation and least frequently assigned to whether an alternative radiation-free examination could be used (74% vs 54%; P < .001). Conclusion Delivery of pre-examination information for radiologic examinations is suboptimal, with half of all patients and caregivers seeking information on their own. Ordering providers are the predominant and preferred source of examination-related information, with respondents placing highest importance on information related to examination preparation.