Research Participants' Perspectives on Using an Electronic Portal for Engagement and Data Collection: Focus Group Results From a Large Epidemiologic Cohort.
ABSTRACT: BACKGROUND:Epidemiologic cohort studies have begun to leverage electronic research participant portals to facilitate data collection, integrate wearable technologies, lower costs, and engage participants. However, little is known about the acceptability of portal use by research participants. OBJECTIVE:The aim of this study is to conduct focus groups among a sample of Cancer Prevention Study-3 (CPS-3) participants to better understand their preferences and concerns about research portals. METHODS:CPS-3 participants were stratified based on sex, race and ethnicity, age, and cancer status, and randomly invited to participate. Focus groups used an exploratory case design with semistructured guides to prompt discussion. Using a constant comparison technique, transcripts were assigned codes to identify themes. RESULTS:Participants (31/59, 52% women; 52/59, 88% White/non-Latinx) were favorably disposed toward using a research participant portal to take surveys, communicate with the study staff, and upload data. Most participants indicated that a portal would be beneficial and convenient but expressed concerns over data safety. Participants stressed the importance of an easy-to-use and trustworthy portal that is compatible with mobile devices. CONCLUSIONS:In addition to being beneficial to researchers, portals may also benefit participants as long as the portals are secure and simple. Participants believe that portals can provide convenient ways to report data and remain connected to the study.
Project description:BACKGROUND:Patient portals are a promising instrument to improve patient-centered care, as they provide patients information and tools that can help them better manage their health. The implementation of portals in both the inpatient and outpatient setting gives health care providers an opportunity to support patients both during hospitalization and after discharge. Thus, there is a need to better understand how inpatient and outpatient portals are used across care contexts. OBJECTIVE:This study aimed to examine patients' perceptions of using inpatient and outpatient portals across the care settings, including how they used the portals and the benefits and concerns associated with portal use. METHODS:This study was conducted in a large Midwestern academic medical center consisting of seven hospitals. We interviewed 120 patients who had used an inpatient portal during their hospitalization, at 15 days and 6 months postdischarge, to determine their perspectives of portal use in both hospital and outpatient settings. Interview transcripts were analyzed inductively and deductively by using team coding processes consistent with a grounded theory approach. RESULTS:Interviews focused on three main areas of portal use: experience with the portal features, perceived benefits, and concerns. Responses at 15 days (n=60) and 6 months (n=60) postdischarge were consistent with respect to perceptions about portal use. Patients identified viewing their health information, managing their schedule, and communicating with providers as notable activities. Convenience, access to information, and better engagement in care were indicated as benefits. Concerns were related to technology issues and privacy/security risks. CONCLUSIONS:Implementation of inpatient portals as a complement to outpatient portals is increasing and can enable patients to better manage aspects of their care. Although care processes vary substantively across settings, the benefits of convenience, improved access to information, and better engagement in care provide opportunities for portal use across care settings to support patient-centered care.
Project description:Patient portals have shown promise in engaging individuals in self-management of chronic conditions by allowing patients to input and track health information and exchange secure electronic messages with their providers. Past studies have identified patient barriers to portal use including usability issues, low health literacy, and concerns about loss of personal contact as well as provider concerns such as increased time spent responding to messages. However, to date, studies of both patient and provider perspectives on portal use have focused on the pre-implementation or initial implementation phases and do not consider how these issues may change as patients and providers gain greater experience with portals.Our study examined the following research question: Within primary care offices with high rates of patient-portal use, what do experienced physician and patient users of the ambulatory portal perceive as the benefits and challenges of portal use in general and secure messaging in particular?This qualitative study involved 42 interviews with experienced physician and patient users of an ambulatory patient portal, Epic's MyChart. Participants were recruited from the Department of Family Medicine at a large Academic Medical Center (AMC) and included providers and their patients, who had been diagnosed with at least one chronic condition. A total of 29 patients and 13 primary care physicians participated in the interviews. All interviews were conducted by telephone and followed a semistructured interview guide. Interviews were transcribed verbatim to permit rigorous qualitative analysis. Both inductive and deductive methods were used to code and analyze the data iteratively, paying particular attention to themes involving secure messaging.Experienced portal users discussed several emergent themes related to a need for greater clarity on when and how to use the secure messaging feature. Patient concerns included worry about imposing on their physician's time, the lack of provider compensation for responding to secure messages, and uncertainty about when to use secure messaging to communicate with their providers. Similarly, providers articulated a lack of clarity as to the appropriate way to communicate via MyChart and suggested that additional training for both patients and providers might be important. Patient training could include orienting patients to the "rules of engagement" at portal sign-up, either in the office or through an online tutorial.As secure messaging through patient portals is increasingly being used as a method of physician-patient communication, both patients and providers are looking for guidance on how to appropriately engage with each other using this tool. Patients worry about whether their use is appropriate, and providers are concerned about the content of messages, which allow them to effectively manage patient questions. Our findings suggest that additional training may help address the concerns of both patients and providers, by providing "rules of engagement" for communication via patient portals.
Project description:BACKGROUND:The inclusion of patient portals into electronic health records in the inpatient setting lags behind progress in the outpatient setting. OBJECTIVE:The aim of this study was to understand patient perceptions of using a portal during an episode of acute care and explore patient-perceived barriers and facilitators to portal use during hospitalization. METHODS:We utilized a mixed methods approach to explore patient experiences in using the portal during hospitalization. All patients received a tablet with a brief tutorial, pre- and postuse surveys, and completed in-person semistructured interviews. Qualitative data were coded using thematic analysis to iteratively develop 18 codes that were integrated into 3 themes framed as patient recommendations to hospitals to improve engagement with the portal during acute care. Themes from these qualitative data guided our approach to the analysis of quantitative data. RESULTS:We enrolled 97 participants: 53 (53/97, 55%) women, 44 (44/97, 45%) nonwhite with an average age of 48 years (19-81 years), and the average length of hospitalization was 6.4 days. A total of 47 participants (47/97, 48%) had an active portal account, 59 participants (59/97, 61%) owned a smartphone, and 79 participants (79/97, 81%) accessed the internet daily. In total, 3 overarching themes emerged from the qualitative analysis of interviews with these patients during their hospital stay: (1) hospitals should provide both access to a device and bring-your-own-device platform to access the portal; (2) hospitals should provide an orientation both on how to use the device and how to use the portal; and (3) hospitals should ensure portal content is up to date and easy to understand. CONCLUSIONS:Patients independently and consistently identified basic needs for device and portal access, education, and usability. Hospitals should prioritize these areas to enable successful implementation of inpatient portals to promote greater patient engagement during acute care. TRIAL REGISTRATION:ClinicalTrials.gov NCT00102401; https://clinicaltrials.gov/ct2/show/NCT01970852.
Project description:BACKGROUND:With increased use of telehealth, interventions to improve infant sleep environments have not been explored. This study sought to assess the feasibility and efficacy of using electronic health record patient portals to transmit photographs of infant sleep between mothers and healthcare professionals as part of an intervention to promote sleep environments consistent with AAP guidelines. METHODS:One hundred eighty-four mother-newborn dyads consented to participate in a randomized trial requiring patient portal registration within 1 month of delivery. We first assessed feasibility as measured by a) the proportion of consented mothers enrolling in the portal and b) maternal adherence to prompts to submit photographs of their infant sleeping to the research team through the patient portal. Intervention group mothers were prompted at 1 and 2?months; controls were prompted only at 2?months. Efficacy was determined via research assistant review of submitted photographs. These assistants were trained to detect sudden unexplained infant death risk factors utilizing AAP guidelines. Standardized feedback was returned to mothers through the patient portal. We used Fisher's Exact test to assess group differences in guideline adherence at 2?months. RESULTS:One hundred nine mothers (59%) enrolled in the patient portal and were randomized to intervention (N?=?55) and control (N?=?54) groups. 21 (38, 95% CI 25-52%) intervention group participants sent photographs at 1?month and received personalized feedback. Across both groups at 2?months, 40 (37, 95% CI 28-46%) sent photographs; 56% of intervention group participants who submitted photographs met all safe sleep criteria compared with 46% of controls (difference 0.10, 95% CI -?0.26 to 0.46, p?=?.75). Common reasons for guideline non-adherence were sleeping in a room without a caregiver (43%), loose bedding (15%) and objects (8%) on the sleep surface. CONCLUSIONS:Utilizing the patient portal to individualize safe infant sleep is possible, however, we encountered numerous barriers in this trial to assess its effects on promoting safe infant sleep. Photographs of infants sleeping showed substantial non-adherence to AAP guidelines, suggesting further needs for improvement to promote safe infant sleep practices. TRIAL REGISTRATION:Name: Improving Infant Sleep Safety With the Electronic Health Record; Clinicaltrials.gov: NCT03662048 ; Date of Registration: September 7, 2018; Data Sharing Statement: None.
Project description:Providing patients with unrestricted access to their electronic medical records through patient portals has impacted patient-provider communication and patients' personal health knowledge. However, little is known about how patient portals are used in oncology.The aim of this study was to understand attitudes of the portal's adoption for oncology and to identify the advantages and disadvantages of using the portal to communicate and view medical information.In-depth semistructured interviews were conducted with 60 participants: 35 patients, 13 oncologists, and 12 medical informaticists. Interviews were recorded, transcribed, and thematically analyzed to identify critical incidents and general attitudes encountered by participants.Two primary themes were discovered: (1) implementation practices influence attitudes, in which the decision-making and execution process of introducing portals throughout the hospital did not include the input of oncologists. Lack of oncologists' involvement led to a lack of knowledge about portal functionality, such as not knowing the time period when test results would be disclosed to patients; (2) perceptions of portals as communication tools varies by user type, meaning that each participant group (patients, oncologists, and medical informaticists) had varied opinions about how the portal should be used to transmit and receive information. Oncologists and medical informaticists had difficulty understanding one another's culture and communication processes in their fields, while patients had preferences for how they would like to receive communication, but it largely depended upon the type of test being disclosed.The majority of patients (54%, 19/35) who participated in this study viewed lab results or scan reports via the portal before being contacted by a clinician. Most were relatively comfortable with this manner of disclosure but still preferred face-to-face or telephone communication. Findings from this study indicate that portal education is needed for both patients and oncologists, especially when portals are implemented across entire health systems since highly specialized areas of medicine may have unique needs and uses. Patient portals in oncology can potentially alter the way diagnoses are delivered and how patients and oncologists communicate. Therefore, communication about the portal should be established during initial consultations so patients can decide whether they want to be informed in such a manner.
Project description:BACKGROUND:Advances in information communication technology provide researchers with the opportunity to access and collect continuous and granular data from enrolled participants. However, recruiting study participants who are willing to disclose their health data has been challenging for researchers. These challenges can be related to socioeconomic status, the source of data, and privacy concerns about sharing health information, which affect data-sharing behaviors. OBJECTIVE:This study aimed to assess healthy non-Hispanic white mothers' attitudes in five areas: motivation to share data, concern with data use, desire to keep health information anonymous, use of patient portal and willingness to share anonymous data with researchers. METHODS:This cross-sectional study was conducted on 622 healthy non-Hispanic white mothers raising healthy children. From a Web-based survey with 51 questions, we selected 15 questions for further analysis. These questions focused on attitudes and beliefs toward data sharing, internet use, interest in future research, and sociodemographic and health questions about mothers and their children. Data analysis was performed using multivariate logistic regressions to investigate the factors that influence mothers' willingness to share their personal health data, their utilization of a patient portal, and their interests in keeping their health information anonymous. RESULTS:The results of the study showed that the majority of mothers surveyed wanted to keep their data anonymous (440/622, 70.7%) and use patient portals (394/622, 63.3%) and were willing to share their data from Web-based surveys (509/622, 81.8%) and from mobile phones (423/622, 68.0%). However, 36.0% (224/622) and 40.5% (252/622) of mothers were less willing to share their medical record data and their locations with researchers, respectively. We found that the utilization of patient portals, their attitude toward keeping data anonymous, and their willingness to share different data sources were dependent on the mothers' health care provider status, their motivation, and their privacy concerns. Mothers' concerns about the misuse of personal health information had a negative impact on their willingness to share sensitive data (ie, electronic medical record: adjusted odds ratio [aOR] 0.43, 95% CI 0.25-0.73; GPS: aOR 0.4, 95% CI 0.27-0.60). In contrast, mothers' motivation to share their data had a positive impact on disclosing their data via Web-based surveys (aOR 5.94, 95% CI 3.15-11.2), apps and devices designed for health (aOR 5.3, 95% CI 2.32-12.1), and a patient portal (aOR 4.3, 95% CI 2.06-8.99). CONCLUSIONS:The findings of this study suggest that mothers' privacy concerns affect their decisions to share sensitive data. However, mothers' access to the internet and the utilization of patient portals did not have a significant effect on their willingness to disclose their medical record data. Finally, researchers can use our findings to better address their study subjects concerns and gain their subjects trust to disclose data.
Project description:BACKGROUND:Digital health interventions, such as the use of patient portals, have been shown to offer benefits to a range of patients including those with a diagnosis of cancer. OBJECTIVE:This study aimed to explore the participant experience and perception of using an interactive Web-based portal for monitoring physical activity, remote symptom reporting, and delivering educational components. METHODS:Participants who were currently under treatment or had recently completed intensive treatment for cancer were recruited to three cohorts and invited to join a Web-based portal to enhance their physical activity. Cohort 1 received Web portal access and an activity monitor; cohort 2 had additional summative messaging; and cohort 3 had additional personalized health coaching messaging. Following the 10-week intervention, participants were invited to participate in a semistructured interview. Interview recordings were transcribed and evaluated using qualitative thematic analysis. RESULTS:A total of 17 semistructured interviews were carried out. Participants indicated that using the Web portal was feasible. Personalized messaging improved participant perceptions of the value of the intervention. There was a contrast between cohorts and levels of engagement with increasing health professional contact leading to an increase in engagement. Educational material needs to be tailored to the participants' cancer treatment status, health literacy, and background. CONCLUSIONS:Participants reported an overall positive experience using the Web portal and that personalized messaging positively impacted on their health behaviors. Future studies should focus more on design of interventions, ensuring appropriate tailoring of information and personalization of behavioral support messaging. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):RR2-10.2196/9586.
Project description:BACKGROUND:Engaging patients in the delivery of health care has the potential to improve health outcomes and patient satisfaction. Patient portals may enhance patient engagement by enabling patients to access their electronic medical records (EMRs) and facilitating secure patient-provider communication. OBJECTIVE:The aim of this study was to review literature describing patient portals tethered to an EMR in inpatient settings, their role in patient engagement, and their impact on health care delivery in order to identify factors and best practices for successful implementation of this technology and areas that require further research. METHODS:A systematic search for articles in the PubMed, CINAHL, and Embase databases was conducted using keywords associated with patient engagement, electronic health records, and patient portals and their respective subject headings in each database. Articles for inclusion were evaluated for quality using A Measurement Tool to Assess Systematic Reviews (AMSTAR) for systematic review articles and the Quality Assessment Tool for Studies with Diverse Designs for empirical studies. Included studies were categorized by their focus on input factors (eg, portal design), process factors (eg, portal use), and output factors (eg, benefits) and by the valence of their findings regarding patient portals (ie, positive, negative, or mixed). RESULTS:The systematic search identified 58 articles for inclusion. The inputs category was addressed by 40 articles, while the processes and outputs categories were addressed by 36 and 46 articles, respectively: 47 articles addressed multiple themes across the three categories, and 11 addressed only a single theme. Nineteen articles had high- to very high-quality, 21 had medium quality, and 18 had low- to very low-quality. Findings in the inputs category showed wide-ranging portal designs; patients' privacy concerns and lack of encouragement from providers were among portal adoption barriers while information access and patient-provider communication were among facilitators. Several methods were used to train portal users with varying success. In the processes category, sociodemographic characteristics and medical conditions of patients were predictors of portal use; some patients wanted unlimited access to their EMRs, personalized health education, and nonclinical information; and patients were keen to use portals for communicating with their health care teams. In the outputs category, some but not all studies found patient portals improved patient engagement; patients perceived some portal functions as inadequate but others as useful; patients and staff thought portals may improve patient care but could cause anxiety in some patients; and portals improved patient safety, adherence to medications, and patient-provider communication but had no impact on objective health outcomes. CONCLUSIONS:While the evidence is currently immature, patient portals have demonstrated benefit by enabling the discovery of medical errors, improving adherence to medications, and providing patient-provider communication, etc. High-quality studies are needed to fully understand, improve, and evaluate their impact.
Project description:BACKGROUND:Sharing test results with patients via patient web portals is a new trend in healthcare. No research has been done examining patient web portal use with bone density test results. The objective of our study was to identify patient characteristics associated with the use of patient web portals to view their bone density test results. METHODS:A secondary analysis of data from a pragmatic randomized controlled trial of 7749 participants ?50?years old that had presented for a dual energy X-ray absorptiometry (DXA) bone density test. Patients were interviewed at enrollment and 12?weeks later. Multivariable logistic regression identified patient characteristics that differentiated those who used the web portal from those who did not. RESULTS:Our sample included 4669 patients at the two (University of Iowa [UI], and Kaiser Permanente of Georgia [KPGA]) clinical sites that had patient web portals. Of these patients, 3399 (72.8%) reported knowing their test results 12?weeks post-DXA, with 649 (13.9%) reporting that they viewed their DXA results using the web portal. Web portal users were more likely to be from UI than KPGA, and were younger, more educated, had higher health literacy, had osteopenia, and had the same sex as their referring physician (all p?<?0.05). CONCLUSION:Only 19.1% of the 3399 patients who knew their DXA results used the available patient web portals to find out about them. Web portal users differed from non-users on several characteristics. This suggests that simply making patient web portals available for use may not be sufficient to appreciably enhance patient awareness of their test results. Based on these findings, a better understanding of the reasons why older, less educated, and less activated patients do not access their test results through patient web portals is needed.
Project description:BACKGROUND:Patients have demonstrated an eagerness to use portals to access their health information and connect with care providers. While outpatient portals have been extensively studied, there is a recognized need for research that examines inpatient portals. OBJECTIVE:We conducted this study to improve our understanding about the role of a portal in the context of inpatient care. Our study focused on a large sample of the general adult inpatient population and obtained perspectives from both patients and care team members about inpatient portal use. METHODS:We interviewed patients (n?=?120) who used an inpatient portal during their hospitalization at 15 days or 6 months after discharge to learn about their portal use. We also interviewed care team members (n?=?331) 4 weeks, 6 months, and 12 months after inpatient portal implementation to collect information about their ongoing perspectives about patients' use of the portal. RESULTS:The perspectives of patients and care team members generally converged on their views of the inpatient portal. Three features-(1) ordering meals, (2) looking up health information, and (3) viewing the care team-were most commonly used; the secure messaging feature was less commonly used and of some concern to care team members. The inpatient portal benefited patients in four main ways: (1) promoted independence, (2) reduced anxiety, (3) informed families, and (4) increased empowerment. CONCLUSION:Inpatient portals are recognized as a tool that can enhance the delivery of patient-centered care. In addition to empowering patients by increasing their sense of control, inpatient portals can support family members and caregivers throughout the hospital stay. Given the consistency of perspectives about portal use across patients and care team members, our findings suggest that inpatient portals may facilitate shifts in organizational culture that increase the patient centeredness of care and improve patient experience in the hospital context.