Utilizing a large-scale biobanking registry to assess patient priorities and preferences for cancer research and education.

Patients consented to biobanking studies typically do not specify research conducted on their samples and data. Our objective was to gauge cancer biobanking participant preferences on research topics. Patient-participants of a biobanking study at a comprehensive cancer center who had an appointment within the last 5 years, had a valid email address, and with a last known vital status of alive, were emailed a newsletter containing a link to a survey about preferences and priorities for research. The survey assessed demographics and research interest in three domains: cancer site, cancer-related topics, and issues faced by cancer patients. 37,384 participants were contacted through email to participate in the survey. 16,158 participants (43.2%) opened the email, 1,626 (4.3% overall, 10% of those who opened the email) completed the survey, and 1,291 (79.4% of those who completed the survey) selected at least one research priority. Among those who selected at least one research priorities for cancer-relevant topics, the most commonly selected were cancer treatment (66%), clinical trials (54%), and cancer prevention (53%). Similarly, the most selected priorities for cancer-related issues faced by patients were physical side effects of cancer (57%), talking to the oncologist (53%), and emotional challenges due to cancer (47%). Differences by gender were observed, with females reporting more interest in research generally. Cancer patients participating in a biobanking protocol prioritized research on treatments, prevention and side effects, which varied by gender.

Outreach to new mothers through direct mail and email: recruitment in the Early Check research study.

Meeting recruitment targets for clinical trials and health research studies is a notable challenge. Unsuccessful efforts to recruit participants from traditionally underserved populations can limit who benefits from scientific discovery, thus perpetuating inequities in health outcomes and access to care. In this study, we evaluated direct mail and email outreach campaigns designed to recruit women who gave birth in North Carolina for a statewide research study offering expanded newborn screening for a panel of rare health conditions. Of the 54,887 women who gave birth in North Carolina from September 28, 2018, through March 19, 2019, and were eligible to be included on the study's contact lists, we had access to a mailing address for 97.9% and an email address for 6.3%. Rural women were less likely to have sufficient contact information available, but this amounted to less than a one percentage point difference by urbanicity. Native American women were less likely to have an email address on record; however, we did not find a similar disparity when recruitment using direct-mail letters and postcards was concerned. Although we sent letters and emails in roughly equal proportion by urbanicity and race/ethnicity, we found significant differences in enrollment across demographic subgroups. Controlling for race/ethnicity and urbanicity, we found that direct-mail letters and emails were effective recruitment methods. The enrollment rate among women who were sent a recruitment letter was 4.1%, and this rate increased to 5.0% among women who were also sent an email invitation. Study Highlights WHAT IS THE CURRENT KNOWLEDGE ON THE TOPIC? Under-representation by traditionally underserved populations in clinical trials and health research is a challenge that may in part reflect inequitable opportunities to participate. WHAT QUESTION DID THIS STUDY ADDRESS? Are direct-mail and email outreach strategies effective for reaching and recruiting women from traditionally underserved and rural populations to participate in large-scale, population-based research? WHAT DOES THIS STUDY ADD TO OUR KNOWLEDGE? Despite sending recruitment letters and email invitations in roughly equal proportion by urbanicity and race/ethnicity, women living in rural areas were less likely to enroll (2.8%) than women from urban areas (4.2%). Additionally, enrollment rates decreased as the probability that women were members of a racial or ethnic minority group increased. HOW MIGHT THIS CHANGE CLINICAL PHARMACOLOGY OR TRANSLATIONAL SCIENCE? Results from this study might encourage researchers to take a holistic and participant-centered view of barriers to study enrollment that may disproportionately affect underserved communities, including differences in willingness to participate, trust, and access to resources needed for uptake.

Patients' adoption of and feature access within electronic patient portals.

OBJECTIVES: We describe online portal account adoption and feature access among subgroups of patients who traditionally have been disadvantaged or represent those with high healthcare needs. STUDY DESIGN: Retrospective cohort study of insured primary care patients 18 years and older (N = 20,282) receiving care from an integrated health system. METHODS: Using data from an electronic health record repository, portal adoption was defined by 1 or more online sessions. Feature access (ie, messaging, appointment management, visit/admission summaries, and medical record access and management) was defined by user-initiated "clicks." Multivariable regression methods were used to identify patient factors associated with portal adoption and feature access among adopters. RESULTS: One-third of patients were portal adopters, with African Americans (odds ratio [OR], 0.50; 95% CI, 0.46-0.56), Hispanics (OR, 0.63; 95% CI, 0.47-0.84), those 70 years and older (OR, 0.48; 95% CI, 0.44-0.52), and those preferring a language other than English (OR, 0.43; 95% CI, 0.31-0.59) less likely to be adopters. On the other hand, the likelihood of portal adoption increased with a higher number of comorbidities (OR, 1.04; 95% CI, 1.02-1.07). Among adopters, record access and management features (95.9%) were accessed most commonly. The majority of adopters also accessed appointment management (76.6%) and messaging (59.1%) features. Similar race and age disparities were found in feature access among adopters. CONCLUSIONS: The diversity of portal features accessed may bode well for the ability of portals to engage some patients, but without purposeful intervention, reliance on portals alone for patient engagement may exacerbate known social disparities-even among those with an activated portal account.

E-Mail Communication Practices and Preferences Among Patients and Providers in a Large Comprehensive Cancer Center.

PURPOSE: Little is known about how electronic mail (e-mail) is currently used in oncology practice to facilitate patient care. The objective of our study was to understand the current e-mail practices and preferences of patients and physicians in a large comprehensive cancer center. METHODS: Separate cross-sectional surveys were administered to patients and physicians (staff physicians and clinical fellows) at the Princess Margaret Cancer Centre. Logistic regression was used to identify factors associated with current e-mail use. Record review was performed to assess the impact of e-mail communication on care. RESULTS: The survey was completed by 833 patients. E-mail contact with a member of the health care team was reported by 41% of respondents. The team members contacted included administrative assistants (52%), nurses (45%), specialist physicians (36%), and family physicians (18%). Patient factors associated with a higher likelihood of e-mail contact with the health care team included younger age, higher education, higher income, enrollment in a clinical trial, and receipt of multiple treatments. Eighty percent of physicians (n = 63 of 79) reported previous contact with a patient via e-mail. Physician factors associated with a greater likelihood of e-mail contact with patients included older age, more senior clinical position, and higher patient volume. Nine hundred sixty-two patient records were reviewed, with e-mail correspondence documented in only 9% of cases. CONCLUSION: E-mail is commonly used for patient care but is poorly documented. The use of e-mail in this setting can be developed with appropriate guidance; however, there may be concerns about widening the gap between certain groups of patients.

Association between secure patient-clinician email and clinical services utilisation in a US integrated health system: a retrospective cohort study.

OBJECTIVE: To assess associations between secure patient-clinician email use and clinical services utilisation over time. DESIGN: Retrospective cohort study between July 2010 and December 2013. Controlling for a utilisation surge around first secure email use, we analysed difference of differences between propensity score-matched groups of secure patient-clinician email users and non-users for utilisation 1-12 months before and 7-18 months after first email (users) or a randomly assigned index date (non-users). SETTING: US integrated healthcare delivery system. PARTICIPANTS: 9345 adults with first secure email use between July 2011 and July 2012 and continuous enrolment for ≥30 months and 9345 adults without secure email use between July 2010 and July 2012 matched to users on demographics, health status, and baseline utilisation. PRIMARY OUTCOME MEASURES: Rates of office visits, patient-initiated phone calls, scheduled telephone visits, after-hours clinic visits, emergency department visits, and hospitalisations. RESULTS: After controlling for multiple factors, no statistically significant differences in utilisation between secure email users and non-users occurred. Utilisation transiently increased by 88-237% around first email use. Annual rates of patient-initiated phone calls decreased among secure email users, 0.2 fewer calls per person (95% CI -0.3 to -0.1), from a mean of 4.1 calls per person 1-12 months before first use to a mean of 3.8 calls per person 7-18 months after first use. Rates of patient-initiated phone calls also decreased among non-users, 0.1 fewer calls per person (95% CI -0.2 to 0.0), from a mean of 4.2 calls per person 1-12 months before the index date to mean of 4.1 calls per person 7-18 months after the index date. CONCLUSIONS: Compared with non-users, patient use of secure email with clinicians was not associated with statistically significant differences in clinical services utilisation 7-18 months after first use.

Patient-initiated e-mails to providers: associations with out-of-pocket visit costs, and impact on care-seeking and health.

OBJECTIVES: To understand when patients use secure e-mail messaging with healthcare providers across several types of questions or concerns, associations between out-of-pocket costs for in-person visits and use of secure messaging, and to examine patient-reported impacts on care-seeking behavior and overall health. STUDY DESIGN: Cross-sectional survey of patients in an integrated healthcare delivery system, with access to a patient portal to send secure e-mail messages to providers at no out-of-pocket cost. METHODS: The study included patients with a chronic condition (N = 1041). We described patient-reported preferences for contacting providers and patient-reported impact of e-mail use on phone calls, in-person visits, and overall health. We used multivariate analyses to examine patient characteristics associated with using e-mail as a first contact method, and effects on care-seeking and health. RESULTS: Overall, 56% of patients sent their provider an e-mail within 1 year, and 46% reported e-mail as their first method of contact for 1 or more types of medical concerns. After adjustment, higher out-of-pocket costs for in-person visits were significantly associated with choosing e-mail as a first method of contact (P < .05). Among patients who had e-mailed their provider, 42% reported that it reduced their phone contacts, 36% reduced in-person office visits and 32% reported e-mailing improved their overall health. CONCLUSIONS: Patients reported using e-mail broadly to initiate conversations with their providers, and patients with higher out-of-pocket costs for in-person visits were more likely to choose e-mail as a first contact method. Use of secure e-mails reduced patients' use of other types of healthcare and resulted in improved overall health.

Randomized trial of depression follow-up care by online messaging.

BACKGROUND: Quality of antidepressant treatment remains disturbingly poor. Rates of medication adherence and follow-up contact are especially low in primary care, where most depression treatment begins. Telephone care management programs can address these gaps, but reliance on live contact makes such programs less available, less timely, and more expensive. OBJECTIVE: Evaluate the feasibility, acceptability, and effectiveness of a depression care management program delivered by online messaging through an electronic medical record. DESIGN: Randomized controlled trial comparing usual primary care treatment to primary care supported by online care management SETTING: Nine primary care clinics of an integrated health system in Washington state PARTICIPANTS: Two hundred and eight patients starting antidepressant treatment for depression. INTERVENTION: Three online care management contacts with a trained psychiatric nurse. Each contact included a structured assessment (severity of depression, medication adherence, side effects), algorithm-based feedback to the patient and treating physician, and as-needed facilitation of follow-up care. All communication occurred through secure, asynchronous messages within an electronic medical record. MAIN MEASURES: An online survey approximately five months after randomization assessed the primary outcome (depression severity according to the Symptom Checklist scale) and satisfaction with care, a secondary outcome. Additional secondary outcomes (antidepressant adherence and use of health services) were assessed using computerized medical records. KEY RESULTS: Patients offered the program had higher rates of antidepressant adherence (81% continued treatment more than 3 months vs. 61%, p = 0.001), lower Symptom Checklist depression scores after 5 months (0.95 vs. 1.17, p = 0.043), and greater satisfaction with depression treatment (53% "very satisfied" vs. 33%, p = 0.004). LIMITATIONS: The trial was conducted in one integrated health care system with a single care management nurse. Results apply only to patients using online messaging. CONCLUSIONS: Our findings suggest that organized follow-up care for depression can be delivered effectively and efficiently through online messaging.

Patient use of secure electronic messaging within a shared medical record: a cross-sectional study.

BACKGROUND: Most patients would like to be able to exchange electronic messages with personal physicians. Few patients and providers are exchanging electronic communications. OBJECTIVE: To evaluate patient characteristics associated with the use of secure electronic messaging between patients and health care providers. DESIGN, SETTING, AND PATIENTS: Cross-sectional cohort study of enrollees over 18 years of age who were enrolled in an integrated delivery system in 2005. MEASUREMENTS AND MAIN RESULTS: Among eligible enrollees, 14% (25,075) exchanged one or more secure messages with a primary or specialty care provider between January 1, 2004 and March 31, 2005. Higher secure messaging use by enrollees was associated with female gender (OR, 1.15; 95% CI, 1.10-1.19), greater overall morbidity (OR, 5.64; 95% CI, 5.07-6.28, comparing high or very high to very low overall morbidity), and the primary care provider's use of secure messaging with other patients (OR, 1.94; 95% CI, 1.67-2.26, comparing 20-50% vs.

Patients with cancer and e-mail: implications for clinical communication.

GOALS OF WORK: The aim of this study was to collect information about cancer patients' current e-mail use and willingness to communicate with healthcare providers by e-mail. MATERIALS AND METHODS: A cohort of 208 patients, undergoing treatment at a comprehensive cancer center in an urban academic medical center in southeastern USA, participated in this descriptive study. An Internet use questionnaire was developed and then used to survey patients with cancer. MAIN RESULTS: The majority of patients indicated that e-mail would be a desirable method of clinical communication. A subset of patients would not use e-mail for clinical purposes even if they had access. CONCLUSIONS: E-mail communication may be an acceptable form of communication among patients, nurses, and other members of the support team. Because a subset of patients will not use this form of communication, assessment of individual patient preferences for use of e-mail is indicated prior to enrolling them in an e-mail communication program.

Identification of national trends in nursing education through the use of an online survey.

Increased access and familiarity with computer technology has enhanced research data collection and analysis processes. Use of the Internet in these processes is rapidly becoming an alternative to traditional paper and pencil methods and can be a useful tool in conducting nursing education research. The purpose of this article is to discuss the use of online survey methodologies to identify nursing education trends and disseminate information nationwide. Advantages, disadvantages and pitfalls of using e-mail in conducting a Web-based survey are presented. The authors describe relevant aspects of developing and implementing an online survey; relate their experience in using this survey method with regard to its strengths and limitations; and, comment regarding efficacy of electronic collection and analysis of research data. The authors' experience in conducting a previously published national study of the integration of holistic nursing practices and complementary and alternative modalities in curricula of baccalaureate and higher degree schools of nursing is used as an exemplar. The authors conclude that, regardless of the current status of technology and lack of computer support in some schools of nursing, an online national survey is a valuable tool in conducting research in nursing education and increasingly will be the method of choice for gathering survey data.