Patient empowerment through a user-centered design of an electronic personal health record: a qualitative study of user requirements in chronic kidney disease.
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ABSTRACT: Background
To improve chronic disease outcomes, self-management is an effective strategy. An electronic personal health record (ePHR) is a promising tool with the potential to support chronic patient's education, counseling, and self-management. Fitting ePHRs within the daily practices of chronic care providers and chronic patients requires user-centered design approaches. We aimed to understand users' needs and requirements in chronic kidney disease (CKD) care to consider in the design of an ePHR to facilitate its implementation, adoption, and use.Methods
A qualitative study was conducted in a major Iranian nephrology center including inpatient and outpatient settings in 2019. We conducted 28 semi-structured interviews with CKD patients, nurses, and adult nephrologists. To confirm or modify the requirements extracted from the interviews, a focus group was also held. Data were analyzed to extract especially those requirements that can facilitate implementation, adoption, and sustained use based on the PHR adoption model and the unified theory of acceptance and use of technology.Results
Participants requested an ePHR that provides access to up to date patient information, facilitates patient-provider communication, and increases awareness about patient individualized conditions. Participants expected a system that is able to cater to low patient e-health literacy and high provider workload. They requested the ePHR to include purposeful documentation of medical history, diagnostic and therapeutic procedures, tailored educational content, and scheduled care reminders. Messaging function, tailored educational content to individual patients' conditions, and controlled access to information were highly valued in order to facilitate its implementation, adoption, and use.Conclusions
We focused on the ePHR's content and functionalities in the face of facilitators and/or barriers envisioned for its adoption in nephrology care. Designers and implementers should value CKD patients' needs and requirements for self-management such as providing personalized education and counseling (on the basis of their condition and risk factors), health literacy, and disease progression levels. The socio-technical aspects of care also need further attention to facilitate ePHR's adoption.
SUBMITTER: Toni E
PROVIDER: S-EPMC8611831 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundThe COVID-19 pandemic has shined a harsh light on a critical deficiency in our health care system: our inability to access important information about patients' values, goals, and preferences in the electronic health record (EHR). At Memorial Sloan Kettering Cancer Center (MSK), we have integrated and systematized health-related values discussions led by oncology nurses for newly diagnosed cancer patients as part of routine comprehensive cancer care. Such conversations include not only the patient's wishes for care at the end of life but also more holistic personal values, including sources of strength, concerns, hopes, and their definition of an acceptable quality of life. In addition, health care providers use a structured template to document their discussions of patient goals of care.ObjectiveTo provide ready access to key information about the patient as a person with individual values, goals, and preferences, we undertook the creation of the Patient Values Tab in our center's EHR to display this information in a single, central location. Here, we describe the interprofessional, interdisciplinary, iterative process and user-centered design methodology that we applied to build this novel functionality as well as our initial implementation experience and plans for evaluation.MethodsWe first convened a working group of experts from multiple departments, including medical oncology, health informatics, information systems, nursing informatics, nursing education, and supportive care, and a user experience designer. We conducted in-depth, semistructured, audiorecorded interviews of over 100 key stakeholders. The working group sought consensus on the tab's main content, homing in on high-priority areas identified by the stakeholders. The core content was mapped to various EHR data sources. We established a set of high-level design principles to guide our process. Our user experience designer then created wireframes of the tab design. The designer conducted usability testing with physicians, nurses, and other health professionals. Data validation testing was conducted.ResultsWe have already deployed the Patient Values Tab to a pilot sample of users in the MSK Gastrointestinal Medical Oncology Service, including physicians, advanced practice providers, nurses, and administrative staff. We have early evidence of the positive impact of this EHR innovation. Audit logs show increasing use. Many of the initial user comments have been enthusiastically positive, while others have provided constructive suggestions for additional tab refinements with respect to format and content.ConclusionsIt is our challenge and obligation to enrich the EHR with information about the patient as a person. Realization of this capability is a pressing public health need requiring the collaboration of technological experts with a broad range of clinical leaders, users, patients, and families to achieve solutions that are both principled and practical. Our new Patient Values Tab represents a step forward in this important direction.
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Project description:Background and study aims
The Federal Ministry of Education and Research (BMBF) has funded the development of a patient controlled “Personal Electronic Health Record” (PEPA) as part of their current INFOPAT project. PEPA allows for the exchange of medical data between all interested groups, including the patients thenselves. A PEPA contains medical reports and findings including, for example, x-rays, CT scans and MRIs. The patients can safeguard their information and access all content. The aim of this study is to test the PEPA-prototype for cancer patients being treated at the National Center for Tumor Diseases (NCT) in Heidelberg.
Who can participate?
Adult colorectal cancer patients being treated at the National Center for Tumor Diseases (NCT) in Heidelberg.
What does the study involve?
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| 2424890 | ecrin-mdr-crc
Project description:The determination of product features, which can be seen as design specifications, is a crucial problem that must be carried out upstream to quickly validate the product configuration according to some attributes in relation to the user perception. To this end, the design methods must evolve toward an analysis compatible with various kind of data that can be qualitative or quantitative. In this paper, a new approach is introduced able to take into account various kind of information in order to determine some quantitative design specifications in accordance with the users perception. This is done through a mathematical formulation that exploit different types of data coming from sensory analysis and physical quantities. This mathematical formulation is then used in an optimization procedure that takes into account a preference order over the sensory attributes. The solution of this optimization problem gives thus the best user-centered specifications that must be used for the conception of the final product.
| S-EPMC6657721 | biostudies-literature
Project description:ObjectiveThe utility of biomedical information retrieval environments can be severely limited when users lack expertise in constructing effective search queries. To address this issue, we developed a computer-based query recommendation algorithm that suggests semantically interchangeable terms based on an initial user-entered query. In this study, we assessed the value of this approach, which has broad applicability in biomedical information retrieval, by demonstrating its application as part of a search engine that facilitates retrieval of information from electronic health records (EHRs).Materials and methodsThe query recommendation algorithm utilizes MetaMap to identify medical concepts from search queries and indexed EHR documents. Synonym variants from UMLS are used to expand the concepts along with a synonym set curated from historical EHR search logs. The empirical study involved 33 clinicians and staff who evaluated the system through a set of simulated EHR search tasks. User acceptance was assessed using the widely used technology acceptance model.ResultsThe search engine's performance was rated consistently higher with the query recommendation feature turned on vs. off. The relevance of computer-recommended search terms was also rated high, and in most cases the participants had not thought of these terms on their own. The questions on perceived usefulness and perceived ease of use received overwhelmingly positive responses. A vast majority of the participants wanted the query recommendation feature to be available to assist in their day-to-day EHR search tasks.Discussion and conclusionChallenges persist for users to construct effective search queries when retrieving information from biomedical documents including those from EHRs. This study demonstrates that semantically-based query recommendation is a viable solution to addressing this challenge.
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Project description:Backgrounde-Consultations between primary care physicians and specialists are a valuable means of improving access to specialty care. Adolescents and young adults (AYAs) face unique challenges in accessing limited adolescent medicine specialty care resources, which contributes to delayed or forgone care. e-Consultations between general pediatricians and adolescent medicine specialists may alleviate these barriers to care. However, the optimal application of this model in adolescent medicine requires careful attention to the nuances of AYA care.ObjectiveThis study aims to qualitatively analyze feedback obtained during the iterative development of an e-consultation system for communication between general pediatricians and adolescent medicine specialists tailored to the specific health care needs of AYAs.MethodsWe conducted an iterative user-centered design and evaluation process in two phases. In the first phase, we created a static e-consultation prototype and storyboards and evaluated them with target users (general pediatricians and adolescent medicine specialists). In the second phase, we incorporated feedback to develop a functional prototype within the electronic health record and again evaluated this with general pediatricians and adolescent medicine specialists. In each phase, general pediatricians and adolescent medicine specialists provided think-aloud feedback during the use of the prototypes and semistructured exit interviews, which was qualitatively analyzed to identify perspectives related to the usefulness and usability of the e-consultation system.ResultsBoth general pediatricians (n=12) and adolescent medicine specialists (n=12) perceived the usefulness of e-consultations for AYA patients, with more varied perceptions of potential usefulness for generalist and adolescent medicine clinicians. General pediatricians and adolescent medicine specialists discussed ways to maximize the usability of e-consultations for AYAs, primarily by improving efficiency (eg, reducing documentation, emphasizing critical information, using autopopulated data fields, and balancing specificity and efficiency through text prompts) and reducing the potential for errors (eg, prompting a review of autopopulated data fields, requiring physician contact information, and prompting explicit discussion of patient communication and confidentiality expectations). Through iterative design, patient history documentation was streamlined, whereas documentation of communication and confidentiality expectations were enhanced.ConclusionsThrough an iterative user-centered design process, we identified user perspectives to guide the refinement of an e-consultation system based on general pediatrician and adolescent medicine specialist feedback on usefulness and usability related to the care of AYAs. Qualitative analysis of this feedback revealed both opportunities and risks related to confidentiality, communication, and the use of tailored documentation prompts that should be considered in the development and use of e-consultations with AYAs.
| S-EPMC8380586 | biostudies-literature
Project description:BackgroundContingency management (CM) is one of the only behavioral interventions shown to be effective for the treatment of opioid use disorders when delivered alone and in combination with pharmacotherapy. Despite extensive empirical support, uptake of CM in community settings remains abysmally low. The current study applied user-centered design principles to gather qualitative data on familiarity with CM, current clinical practice, and preferences regarding the implementation of CM in community-based opioid treatment programs.MethodsParticipants were 21 leaders and 22 front-line counselors from 11 community-based opioid treatment programs. Semi-structured interviews were about 45 min long. Transcripts from each interview were coded by independent raters and analyzed using a reflexive team approach. Frequencies of responses were tallied, and queries were run in NVivo to identify exemplar quotes for each code.ResultsResults indicated low familiarity with CM, with less than half of the respondents defining CM correctly and over 40% of respondents declining to answer/ did not know. Abstinence was the most commonly recommended CM target, yet over 70% of respondents indicated that urine screens only occurred monthly. Attendance was also a popular recommendation, with respondents suggesting a range of possible indices including counseling, dosing, and/or case management sessions. Regarding the ideal role to administer CM prizes, program directors and supervisors were most commonly recommended, closely followed by front-line counselors. The most commonly suggested strategies to afford CM incentives included soliciting community donations and offering non-financial incentives.ConclusionsUser design principles to understand workflow constraints, target user needs, and simplify the intervention guided this qualitative investigation of CM implementation in opioid treatment programs. Findings highlighted the potential value of flexible, organization-specific definitions of CM attendance and non-financial incentives, as well as active involvement of clinical leaders and supervisors to promote buy in among staff/patients. Respondents were generally optimistic about their ability to fundraise or solicit donations to overcome cost-related barriers of CM. Implications for CM implementation strategies, including the use of targeted leadership coaching focused on sustainability, are explored.
| S-EPMC6617614 | biostudies-literature
Project description:BackgroundUp to 60% of health care providers experience one or more symptoms of burnout. Perceived clinician burden resulting in burnout arises from factors such as electronic health record (EHR) usability or lack thereof, perceived loss of autonomy, and documentation burden leading to less clinical time with patients. Burnout can have detrimental effects on health care quality and contributes to increased medical errors, decreased patient satisfaction, substance use, workforce attrition, and suicide.ObjectiveThis project aims to improve the user-centered design of the EHR by obtaining direct input from clinicians about deficiencies. Fixing identified deficiencies via user-centered design has the potential to improve usability, thereby increasing satisfaction by reducing EHR-induced burnout.MethodsQuantitative and qualitative data will be obtained from clinician EHR users. The input will be received through a form built in a REDCap database via a link embedded in the home page of the EHR. The REDCap data will be analyzed in 2 main dimensions, based on nature of the input, what section of the EHR is affected, and what is required to fix the issue(s). Identified issues will be escalated to relevant stakeholders responsible for rectifying the problems identified. Data analysis, project evaluation, and lessons learned from the evaluation will be incorporated in a Plan-Do-Study-Act (PDSA) manner every 4-6 weeks.ResultsThe pilot phase of the study began in October 2020 in the Gastroenterology Division at Mount Sinai Hospital, New York City, NY, which includes 39 physicians and 15 nurses. The pilot is expected to run over a 4-6-month period. The results of the REDCap data analysis will be reported within 1 month of completing the pilot phase. We will analyze the nature of requests received and the impact of rectified issues on the clinician EHR user. We expect that the results will reveal which sections of the EHR have the highest deficiencies while also highlighting issues about workflow difficulties. Perceived impact of the project on provider engagement, patient safety, and workflow efficiency will also be captured by evaluation survey and other qualitative methods where possible.ConclusionsThe project aims to improve user-centered design of the EHR by soliciting direct input from clinician EHR users. The ultimate goal is to improve efficiency, reduce EHR inefficiencies with the possibility of improving staff engagement, and lessen EHR-induced clinician burnout. Our project implementation includes using informatics expertise to achieve the desired state of a learning health system as recommended by the National Academy of Medicine as we facilitate feedback loops and rapid cycles of improvement.International registered report identifier (irrid)PRR1-10.2196/25148.
| S-EPMC8294464 | biostudies-literature
Project description:BackgroundResearchers developing personal health tools employ a range of approaches to involve prospective users in design and development.ObjectiveThe aim of this paper was to develop a validated measure of the human- or user-centeredness of design and development processes for personal health tools.MethodsWe conducted a psychometric analysis of data from a previous systematic review of the design and development processes of 348 personal health tools. Using a conceptual framework of user-centered design, our team of patients, caregivers, health professionals, tool developers, and researchers analyzed how specific practices in tool design and development might be combined and used as a measure. We prioritized variables according to their importance within the conceptual framework and validated the resultant measure using principal component analysis with Varimax rotation, classical item analysis, and confirmatory factor analysis.ResultsWe retained 11 items in a 3-factor structure explaining 68% of the variance in the data. The Cronbach alpha was .72. Confirmatory factor analysis supported our hypothesis of a latent construct of user-centeredness. Items were whether or not: (1) patient, family, caregiver, or surrogate users were involved in the steps that help tool developers understand users or (2) develop a prototype, (3) asked their opinions, (4) observed using the tool or (5) involved in steps intended to evaluate the tool, (6) the process had 3 or more iterative cycles, (7) changes between cycles were explicitly reported, (8) health professionals were asked their opinion and (9) consulted before the first prototype was developed or (10) between initial and final prototypes, and (11) a panel of other experts was involved.ConclusionsThe User-Centered Design 11-item measure (UCD-11) may be used to quantitatively document the user/human-centeredness of design and development processes of patient-centered tools. By building an evidence base about such processes, we can help ensure that tools are adapted to people who will use them, rather than requiring people to adapt to tools.
| S-EPMC8074832 | biostudies-literature
Project description:Evidence-based preventive services offer profound health benefits, yet Americans receive only half of indicated care. A variety of government and specialty society policy initiatives are promoting the adoption of information technologies to engage patients in their care, such as personal health records, but current systems may not utilize the technology's full potential.Using a previously described model to make information technology more patient-centered, we developed an interactive preventive health record (IPHR) designed to more deeply engage patients in preventive care and health promotion. We recruited 14 primary care practices to promote the IPHR to all adult patients and sought practice and patient input in designing the IPHR to ensure its usability, salience, and generalizability. The input involved patient usability tests, practice workflow observations, learning collaboratives, and patient feedback. Use of the IPHR was measured using practice appointment and IPHR databases.The IPHR that emerged from this process generates tailored patient recommendations based on guidelines from the U.S. Preventive Services Task Force and other organizations. It extracts clinical data from the practices' electronic medical record and obtains health risk assessment information from patients. Clinical content is translated and explained in lay language. Recommendations review the benefits and uncertainties of services and possible actions for patients and clinicians. Embedded in recommendations are self management tools, risk calculators, decision aids, and community resources--selected to match patient's clinical circumstances. Within six months, practices had encouraged 14.4% of patients to use the IPHR (ranging from 1.5% to 28.3% across the 14 practices). Practices successfully incorporated the IPHR into workflow, using it to prepare patients for visits, augment health behavior counseling, explain test results, automatically issue patient reminders for overdue services, prompt clinicians about needed services, and formulate personalized prevention plans.The IPHR demonstrates that a patient-centered personal health record that interfaces with the electronic medical record can give patients a high level of individualized guidance and be successfully adopted by busy primary care practices. Further study and refinement are necessary to make information systems even more patient-centered and to demonstrate their impact on care.Clinicaltrials.gov identifier: NCT00589173.
| S-EPMC3250934 | biostudies-literature
Project description:BackgroundChildhood overweight and obesity are major health challenges in the United States. One of the recommendations to combat obesity is to maintain a healthy diet, which is often best supported by eating home-cooked meals to control cooking methods, ingredients, and portions. Diet control through home cooking is challenged because of the decline in culinary skills in the population and a paucity of effective culinary nutrition education (CNE) programs. Providing technology-enabled CNE (CNE-tech) to overweight and obese adolescents can equip them with life skills that can assist them in the future. Such skills can facilitate saving money, eating healthier, and creating social environments. In addition, CNE builds cooking confidence and food literacy that in turn can build adolescent self-efficacy, particularly toward managing their health behaviors.ObjectiveThis study aimed to inform functionalities, design requirements, and the context of use for CNE-tech that could enhance overweight and obese adolescents' healthy food literacy, cooking confidence, and general self-efficacy with regard to self-management to ultimately promote healthy lifestyle management.MethodsThe design science study was completed in 2 distinct phases engaging overweight and obese adolescents, parents of overweight and obese adolescents, and the health care providers that treat adolescents with these conditions. Phase 2, our primary source of data, involved user-centered design methods including the following: (1) early stage prototype usability analysis, (2) semistructured interviews with 70 overweight or obese adolescents engaged in a healthy behavior program, and (3) semistructured interviews with 10 health care providers. Data were analyzed using constant comparison analysis to identify functionalities, design requirements, and inform the context of use of CNE-tech.ResultsData revealed specific desired functionalities for the CNE-tech related to building cooking skills, populating a healthy recipe database, suggesting healthy alternatives, supporting the construction of a healthy plate, and the ability to share healthy recipes and cooking accomplishments. Moreover, the adolescents provided design requirements pertaining to the presentation (eg, vivid colors, semirealistic images, and cooking sounds), use of multimedia, and gaming. Data further revealed contextual factors, such as shared experiences with family members and enhanced continued use.ConclusionsWe demonstrate the potentiality of creating CNE-tech that could effectively lead to better self-care and induce sustainable behavioral change as it facilitates skill building, self-efficacy, and a pathway that enables overweight and obese adolescents to influence cooking habits in their family home and future dwellings. Our CNE-tech-proposed solution aligns with the goals of overweight and obese adolescents and also reflects existing theories about behavioral change.
| S-EPMC6690165 | biostudies-literature