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BACKGROUND: Patient decision aids (PDAs) should provide evidence-based information so patients can make informed decisions. Yet, PDA developers do not have an agreed-upon process to select, synthesize and present evidence in PDAs. OBJECTIVE: To reach the consensus on an evidence summarization process for PDAs. DESIGN: A two-round modified Delphi survey. SETTING AND PARTICIPANTS: A group of international experts in PDA development invited developers, scientific networks, patient groups and listservs to complete Delphi surveys. DATA COLLECTION: We emailed participants the study description and a link to the online survey. Participants were asked to rate each potential criterion (omit, possible, desirable, essential) and provide qualitative feedback. ANALYSIS: Criteria in each round were retained if rated by >80% of participants as desirable or essential. If two or more participants suggested rewording, reordering or merging, the steering group considered the suggestion. RESULTS: Following two Delphi survey rounds, the evidence summarization process included defining the decision, reporting the processes and policies of the evidence summarization process, assembling the editorial team and managing (collect, manage, report) their conflicts of interest, conducting a systematic search, selecting and appraising the evidence, presenting the harms and benefits in plain language, and describing the method of seeking external review and the plan for updating the evidence (search, selection and appraisal of new evidence). CONCLUSION: A multidisciplinary stakeholder group reached consensus on an evidence summarization process to guide the creation of high-quality PDAs. PATIENT CONTRIBUTION: A patient partner was part of the steering group and involved in the development of the Delphi survey.
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Técnicas de Apoio para a Decisão , Projetos de Pesquisa , Consenso , Técnica Delphi , Humanos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Providing digital recordings of clinic visits to patients has emerged as a strategy to promote patient and family engagement in care. With advances in natural language processing, an opportunity exists to maximize the value of visit recordings for patients by automatically tagging key visit information (eg, medications, tests, and imaging) and linkages to trustworthy web-based resources curated in an audio-based personal health library. OBJECTIVE: This study aims to report on the user-centered development of HealthPAL, an audio personal health library. METHODS: Our user-centered design and usability evaluation approach incorporated iterative rounds of video-recorded sessions from 2016 to 2019. We recruited participants from a range of community settings to represent older patient and caregiver perspectives. In the first round, we used paper prototypes and focused on feature envisionment. We moved to low-fidelity and high-fidelity versions of the HealthPAL in later rounds, which focused on functionality and use; all sessions included a debriefing interview. Participants listened to a deidentified, standardized primary care visit recording before completing a series of tasks (eg, finding where a medication was discussed in the recording). In the final round, we recorded the patients' primary care clinic visits for use in the session. Findings from each round informed the agile software development process. Task completion and critical incidents were recorded in each round, and the System Usability Scale was completed by participants using the digital prototype in later rounds. RESULTS: We completed 5 rounds of usability sessions with 40 participants, of whom 25 (63%) were women with a median age of 68 years (range 23-89). Feedback from sessions resulted in color-coding and highlighting of information tags, a more prominent play button, clearer structure to move between one's own recordings and others' recordings, the ability to filter recording content by the topic discussed and descriptions, 10-second forward and rewind controls, and a help link and search bar. Perceived usability increased over the rounds, with a median System Usability Scale of 78.2 (range 20-100) in the final round. Participants were overwhelmingly positive about the concept of accessing a curated audio recording of a clinic visit. Some participants reported concerns about privacy and the computer-based skills necessary to access recordings. CONCLUSIONS: To our knowledge, HealthPAL is the first patient-centered app designed to allow patients and their caregivers to access easy-to-navigate recordings of clinic visits, with key concepts tagged and hyperlinks to further information provided. The HealthPAL user interface has been rigorously co-designed with older adult patients and their caregivers and is now ready for further field testing. The successful development and use of HealthPAL may help improve the ability of patients to manage their own care, especially older adult patients who have to navigate complex treatment plans.
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Cuidadores , Design Centrado no Usuário , Adulto , Idoso , Idoso de 80 Anos ou mais , Assistência Ambulatorial , Feminino , Humanos , Pessoa de Meia-Idade , Atenção Primária à Saúde , Adulto JovemRESUMO
BACKGROUND: Few clinics in the United States routinely offer patients audio or video recordings of their clinic visits. While interest in this practice has increased, to date, there are no data on the prevalence of recording clinic visits in the United States. OBJECTIVE: Our objectives were to (1) determine the prevalence of audiorecording clinic visits for patients' personal use in the United States, (2) assess the attitudes of clinicians and public toward recording, and (3) identify whether policies exist to guide recording practices in 49 of the largest health systems in the United States. METHODS: We administered 2 parallel cross-sectional surveys in July 2017 to the internet panels of US-based clinicians (SERMO Panel) and the US public (Qualtrics Panel). To ensure a diverse range of perspectives, we set quotas to capture clinicians from 8 specialties. Quotas were also applied to the public survey based on US census data (gender, race, ethnicity, and language other than English spoken at home) to approximate the US adult population. We contacted 49 of the largest health systems (by clinician number) in the United States by email and telephone to determine the existence, or absence, of policies to guide audiorecordings of clinic visits for patients' personal use. Multiple logistic regression models were used to determine factors associated with recording. RESULTS: In total, 456 clinicians and 524 public respondents completed the surveys. More than one-quarter of clinicians (129/456, 28.3%) reported that they had recorded a clinic visit for patients' personal use, while 18.7% (98/524) of the public reported doing so, including 2.7% (14/524) who recorded visits without the clinician's permission. Amongst clinicians who had not recorded a clinic visit, 49.5% (162/327) would be willing to do so in the future, while 66.0% (346/524) of the public would be willing to record in the future. Clinician specialty was associated with prior recording: specifically oncology (odds ratio [OR] 5.1, 95% CI 1.9-14.9; P=.002) and physical rehabilitation (OR 3.9, 95% CI 1.4-11.6; P=.01). Public respondents who were male (OR 2.11, 95% CI 1.26-3.61; P=.005), younger (OR 0.73 for a 10-year increase in age, 95% CI 0.60-0.89; P=.002), or spoke a language other than English at home (OR 1.99; 95% CI 1.09-3.59; P=.02) were more likely to have recorded a clinic visit. None of the large health systems we contacted reported a dedicated policy; however, 2 of the 49 health systems did report an existing policy that would cover the recording of clinic visits for patient use. The perceived benefits of recording included improved patient understanding and recall. Privacy and medicolegal concerns were raised. CONCLUSIONS: Policy guidance from health systems and further examination of the impact of recordings-positive or negative-on care delivery, clinician-related outcomes, and patients' behavioral and health-related outcomes is urgently required.
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Assistência Ambulatorial/normas , Gravação em Vídeo/métodos , Adolescente , Adulto , Estudos Transversais , Feminino , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Estados Unidos , Adulto JovemRESUMO
BACKGROUND: Opioid misuse risk may be similar in individuals with chronic cancer and noncancer pain. However, risk screening is not uniformly used for patients with cancer, so its prevalence is unknown. OBJECTIVES: The primary aim of this study was to estimate the level of risk for opioid misuse among patients with cancer. Secondary aims were to compare opioid misuse risk across cancer types and specialties and to explore psychosocial factors that may contribute to opioid misuse risk. METHODS: Clinicians were trained to administer the Opioid Risk Tool during ambulatory visits. Data were retrieved from electronic health records and analyzed using descriptive statistics. FINDINGS: Five percent of patients seen in the cancer center during the data collection period were screened for opioid misuse risk. Of the 226 patients screened, 163 were at low risk, 34 were at moderate risk, and 29 were at high risk for future opioid misuse. The most frequent cancer diagnoses for patients at moderate or high risk were lung (n = 15), breast (n = 16), gastrointestinal (n = 10), and genitourinary (n = 8). Of the 63 patients at moderate or high risk, 50 had a family history of substance misuse, 45 had a personal history of substance misuse, and 29 had a history of psychological disease.
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Dor Crônica , Neoplasias , Transtornos Relacionados ao Uso de Opioides , Analgésicos Opioides/efeitos adversos , Dor Crônica/tratamento farmacológico , Humanos , Neoplasias/tratamento farmacológico , Neoplasias/epidemiologia , Transtornos Relacionados ao Uso de Opioides/diagnóstico , Dor/tratamento farmacológico , Prevalência , Fatores de RiscoRESUMO
BACKGROUND: The implementation of shared decision-making and patient decision aids (PDAs) is impeded by clinicians' attitudes. OBJECTIVE: To develop a measure of clinician attitude towards PDAs. METHODS: To develop the ADOPT measure, we used four stages, culminating in measure responses by medically qualified clinicians, 25 from each of the following specialties: emergency medicine, family medicine, oncology, obstetrics and gynaecology, orthopaedics, and psychiatry. To assess validity, we also posed three questions to assess the participants' attitudinal and behavioural endorsement of PDAs. Allocating a point per adjective, we calculated the sum as well as positive and negative scores. We used univariate logistic regression to determine associations between the scores and attitudinal or behavioural endorsements. RESULTS: 152 clinicians completed the measure. 'Time-saving' (39%) and 'easy' (34%) were the most frequently selected adjectives. 'Time-consuming' and 'unfamiliar' were the most frequently selected negative adjectives (both 19%). The sum scores were significantly associated with behavioural endorsement of PDAs. DISCUSSION: Clinicians were able to respond to adjective-selection methods and the ADOPT measure could help assess clinician attitudes to PDAs. Validation will require further research. PRACTICE IMPLICATIONS: The ADOPT measure could help identify the extent and source of attitudinal resistance.
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Tomada de Decisões , Participação do Paciente , Atitude do Pessoal de Saúde , Técnicas de Apoio para a Decisão , Medicina de Família e Comunidade , Humanos , Participação do Paciente/métodosRESUMO
OBJECTIVES: To examine the experiences among Dutch and American clinicians on the impact of using encounter patient decision aids (ePDAs) on their clinical practice, and subsequently to formulate recommendations for sustained ePDA use in clinical practice. DESIGN: Qualitative study using semi-structured interviews with clinicians who used 11 different ePDAs (applicable to their specialty) for 3 months after a short training. The verbatim transcribed interviews were coded with thematic analysis by six researchers via ATLAS.ti. SETTING: Nine hospitals in the Netherlands and two hospitals in the USA. PARTICIPANTS: Twenty-five clinicians were interviewed: 16 Dutch medical specialists from four different disciplines (gynaecologists, ear-nose-throat specialists, neurologists and orthopaedic surgeon), 5 American gynaecologists and 4 American gynaecology medical trainees. RESULTS: The interviews showed that the ePDA potentially impacted the patient-clinician dialogue in several ways. We identified six themes that illustrate this: that is, (1) communication style, for example, structuring the conversation; (2) the patient's role, for example, encouraging patients to ask more questions; (3) the clinician's role, for example, prompting clinicians to discuss more information; (4) workflow, for example, familiarity with the ePDA's content helped to integrate it into practice; (5) shared decision-making (SDM), for example, mixed experiences whether the ePDA contributed to SDM; and (6) content of the ePDA. Recommendations to possibly improve ePDA use based on the clinician's experiences: (1) add pictorial health information to the ePDA instead of text only and (2) instruct clinicians how to use the ePDA in a flexible (depending on their discipline and setting) and personalised way adapting the ePDA to the patients' needs (e.g., mark off irrelevant options). CONCLUSIONS: ePDAs contributed to the patient-clinician dialogue in several ways according to medical specialists. A flexible and personalised approach appeared appropriate to integrate the use of ePDAs into the clinician's workflow, and customise their use to individual patients' needs.
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Tomada de Decisão Compartilhada , Medicina , Tomada de Decisões , Técnicas de Apoio para a Decisão , Etnicidade , Humanos , Pesquisa Qualitativa , Estados UnidosRESUMO
OBJECTIVE: Is the level of shared decision-making (SDM) higher after introduction of a SDM package (including encounter decision aids on treatment options for heavy menstrual bleeding and training for clinicians) than before?. METHODS: This before-after study, performed in OB-GYN practice, compared consultations before and after introduction of a SDM package. The target sample size was 25 patients per group. Women seeking treatment for heavy menstrual bleeding were eligible. After their appointments, patients filled out a three-item patient-reported SDM measure. Treatment discussions were audio-recorded and rated for SDM using Observer OPTION5. Consultation transcripts in the 'after' group were checked for adherence to the steps required for intended use of decision aids. RESULTS: 16 gynaecologists participated. 25 patients participated before introduction of the decision aids and 28 after. The proportion of women reporting optimal SDM was higher after introduction (75 %) than before (50 %;p < 0.001). The mean observer-rated level of SDM was also significantly higher after than before (MD = 12.50,95 % CI 5.53-19.47). CONCLUSION: The level of SDM was higher after the introduction of the package than before. PRACTICE IMPLICATIONS: This study was conducted in a real-life setting in three clinics, both large academic and small rural, offering opportunities for implementation in different type of organizations.
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Leiomioma , Menorragia , Estudos Controlados Antes e Depois , Tomada de Decisões , Técnicas de Apoio para a Decisão , Feminino , Humanos , Leiomioma/terapia , Participação do PacienteRESUMO
OBJECTIVES: The objective of this study is to build and evaluate a natural language processing approach to identify medication mentions in primary care visit conversations between patients and physicians. MATERIALS AND METHODS: Eight clinicians contributed to a data set of 85 clinic visit transcripts, and 10 transcripts were randomly selected from this data set as a development set. Our approach utilizes Apache cTAKES and Unified Medical Language System controlled vocabulary to generate a list of medication candidates in the transcribed text and then performs multiple customized filters to exclude common false positives from this list while including some additional common mentions of the supplements and immunizations. RESULTS: Sixty-five transcripts with 1121 medication mentions were randomly selected as an evaluation set. Our proposed method achieved an F-score of 85.0% for identifying the medication mentions in the test set, significantly outperforming existing medication information extraction systems for medical records with F-scores ranging from 42.9% to 68.9% on the same test set. DISCUSSION: Our medication information extraction approach for primary care visit conversations showed promising results, extracting about 27% more medication mentions from our evaluation set while eliminating many false positives in comparison to existing baseline systems. We made our approach publicly available on the web as an open-source software. CONCLUSION: Integration of our annotation system with clinical recording applications has the potential to improve patients' understanding and recall of key information from their clinic visits, and, in turn, to positively impact health outcomes.
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OBJECTIVE: It is unclear whether data from patient-reported outcome measures (PROMs) are captured and used by clinicians despite policy initiatives. We examined the extent to which fall risk and urinary incontinence (UI) reported on PROMS and provided to clinicians prior to a patient visit are subsequently captured in the electronic medical record (EMR). Additionally, we aimed to determine whether the use of PROMs and EMR documentation is higher for visits where PROM data was provided to clinicians. DESIGN: We conducted a cross-sectional patient-reported risk assessment survey and semi-structured interviews with clinicians to identify themes related to the use of PROMs. SETTING: Fourteen primary care clinics in the US (eight intervention and six control clinics), between October 2013 and May 2015. PARTICIPANTS: Primary care clinicians and older adult (≥66 years) patients completing a 46-item health risk assessment, including PROMs for fall risk and UI. INTERVENTION: Risk assessment results provided to the clinician or nurse practitioners prior to the clinic visit in intervention clinics; data was not provided in control clinics. MAIN OUTCOME: 1) Agreement between ICD-9 codes of fall risk or UI in the EMR and patient-reports, and 2) clinician experience of PROMs use and impact on coding. RESULTS: A total of 505 older adult patients were included in the study, 176 at control clinics and 329 at intervention clinics. While patient reports of fall risk and UI were readily captured by PROMs, this information was only coded in the EMR between 3% - 14% of the time (poor Kappa agreement). Intervention clinics performed slightly better than control clinics. Clinician interviews (n = 16) revealed low use of PROMs data with multiple barriers cited including poor access to data, high quantity of data, interruption to workflow, and a lack of training on PROMs. CONCLUSIONS: Current strategies of providing PROMs data prior to clinic visits may not be an effective way of communicating important health information to busy clinicians; ultimately resulting in underuse. Better systems of presenting PROMs data, and clinician training on the importance of PROMs and their use, is needed.
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Introduction: Ineffective hospital discharge communication can significantly impact patient understanding, safety and treatment adherence. This may be especially true for cardiology inpatients who leave the hospital with complex discharge plans delivered in a time-pressured discharge discussion. The goal of this pilot trial was to determine if providing supplemental audio-recorded discharge instructions is feasible and to explore its impact on cardiology patients' ability to understand and self-manage their care . Methods and analysis: We will conduct a parallel-group, randomised controlled trial in adult cardiology inpatients with balanced blocking by a physician. Patients (n=50) will be randomised to usual care (verbal discussion and written summary) or intervention (usual care, plus audio-recorded discharge discussion provided to patients on a portable electronic recording device). Enrolled patients will complete study assessments immediately prior to the discharge discussion, immediately postdischarge discussion and 1 week after hospital discharge by telephone. Primary outcomes include the proportion of eligible providers and inpatients who agree to take part in the trial, the proportion of inpatients who receive the audio recording in accordance with a fidelity checklist, and the proportion who use the audio recording. We will analyse preliminary data about the impact of audio recording on patient activation, health confidence, provider communication ability, adherence and 30-day readmissions. Ethics and dissemination: This trial was approved by The Committee for the Protection of Human Subjects (CPHS) at Dartmouth College (CPHS# 00031211). Findings will be disseminated in scientific journals and at meetings. Trial registration number: NCT03735342. Protocol version: 1.0.
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OBJECTIVE: To develop and pilot an encounter-based decision aid (eDA) for people with depression for use in primary care. DESIGN: We developed an eDA for depression through cognitive interviews and pilot tested it using a one-group pretest, post-test design in primary care. Feasibility, fidelity of eDA use and acceptability were assessed using recruitment rates and semistructured interviews with patients, medical assistants and clinicians. Treatment choice and shared decision-making (SDM) were also assessed. SETTING: Interviews with adult patients and the public were conducted in a mall and library in Grafton County, New Hampshire, while clinician interviews took place by phone or at the clinician's office. Pilot testing occurred in a New Hampshire primary care practice. PARTICIPANTS: Cognitive interviews were conducted with adults, ≥18 years, who could read English from the following stakeholder groups: history of depression, the public and clinicians. Patients with a Patient Health Questionnaire-9 score of ≥5 were recruited for piloting. RESULTS: Three stages of cognitive interviews were conducted (n=28). Changes to eDA included moving the combination therapy information and access to treatment information, adding colour, modifying pictograms and editing the talk-therapy description. Clinician concerns about patient health literacy were not reflected in patient interviews. Of 59 patients who reviewed study information, 56 were eligible and agreed to participate in pilot testing; however, only 29 could be reached for follow-up. The eDA was widely accepted, though clinicians did not always use it as intended. We found no impact of eDA use on SDM, though patients chose a wider range of treatment options. CONCLUSIONS: We demonstrated the feasibility of the use of an eDA for depression in primary care that was widely accepted. Further research is needed to improve the fidelity with which the eDA is used and to assess its impact on SDM and related health outcomes.
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Tomada de Decisão Compartilhada , Técnicas de Apoio para a Decisão , Transtorno Depressivo/terapia , Atenção Primária à Saúde/métodos , Adulto , Idoso , Atitude do Pessoal de Saúde , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde , Participação do Paciente , Projetos Piloto , Adulto JovemRESUMO
OBJECTIVE: Our aim was to gather community stakeholder input to inform the development of a digital system linking depression screening to decision support. METHODS: Views and feature requirements were identified through (1) focus groups with patients and consumers with depression, and interviews with primary care clinicians and (2) usability sessions where patients and consumers used the current version of encounter decision aid (eDA) in a primary care waiting room. Qualitative data were analyzed using the framework method. RESULTS: We conducted six focus groups with 15 participants, seven clinician interviews and 10 usability sessions. Patients were comfortable completing the Patient Health Questionnaire (PHQ-9) and receiving the electronic eDA in clinic. They felt this would allow patients to prepare for their visit and instill a sense of agency. Participants were comfortable receiving the PHQ-9 results and a subsequent eDA on a tablet in the waiting room. CONCLUSION: Patients with and without depression, as well as clinicians, viewed linking the PHQ-9, results, and eDA positively. Patients were comfortable doing this in the clinic waiting room. PRACTICE IMPLICATIONS: Linking depression decision support to screening was viewed positively by patients and clinicians, and could help overcome barriers to shared decision-making implementation in this population.
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Tomada de Decisões , Técnicas de Apoio para a Decisão , Participação do Paciente/métodos , Atenção Primária à Saúde/métodos , Pesquisa Participativa Baseada na Comunidade , Depressão/diagnóstico , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Programas de Rastreamento , Desenvolvimento de ProgramasRESUMO
INTRODUCTION: Information included in a patient decision aid (PDA) can significantly influence patients' decisions and is, therefore, expected to be evidence-based and rigorously selected and summarised. PDA developers have not yet agreed on a standardised process for the selection and summarisation of the supporting evidence. We intend to generate consensus on a process (and related steps and criteria) for selecting and summarising evidence for PDAs using a modified Delphi survey. METHODS AND ANALYSIS: We will develop an evidence summarisation process specific to PDA development by using a consensus-based Delphi approach, surveying international experts and stakeholders with two to three rounds. To increase generalisability and acceptability, we will distribute the survey to the following stakeholder groups: PDA developers, researchers with expertise in shared decision making, PDA development and evidence summarisation, members of the International Patient Decision Aids Standards (IPDAS) collaboration, policy makers with expertise in PDA certification and patient stakeholder groups. For each criterion, if at least 80% of survey participants rank the criterion as most important/least important, we will consider that consensus has been achieved. ETHICS AND DISSEMINATION: It is critical for PDAs to have accurate and trustworthy evidence-based information about the risks and benefits of health treatments and tests, as these decision aids help patients make important choices. We want to generate consensus on an approach for selecting and summarising the evidence included in PDAs, which can be widely implemented by PDA developers. Dartmouth College's Committee for the Protection of Human Subjects approved this protocol. We will publish our results in a peer reviewed journal.
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Tomada de Decisões , Técnicas de Apoio para a Decisão , Medicina Baseada em Evidências , Participação do Paciente , Pessoal Administrativo , Consenso , Técnica Delphi , Humanos , Projetos de Pesquisa , Participação dos Interessados , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: Our aim was to evaluate how organizations that develop patient decision aids conduct their evidence summarization process and assess whether their current processes provide sufficient information to instill confidence that patient decision aids are trustworthy and up to date. STUDY DESIGN AND SETTING: We identified 23 organizations from a public inventory of patient decision aid developers and included only organizations that have produced five or more tools. These organizations were asked to complete a 17-item survey and to share relevant documents. RESULTS: Of the 23 organizations, 18 completed the survey, and 15 were eligible for analysis. Most organizations reported using existing systematic reviews and clinical practice guidelines. Seven of 15 had a documented approach for summarizing evidence, but the documents offered varying levels of detail. Common steps identified are tool-relevant question formation, search strategies, evidence appraisals, and updating policies. CONCLUSIONS: Organizations do not use a standardized process to summarize evidence for the patient decision aids that they develop. This is problematic, given that the information they contain is known to influence patients' decisions. Further attention to how organizations summarize evidence for these tools is required.
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Técnicas de Apoio para a Decisão , Política Organizacional , Tomada de Decisões , Humanos , Participação do Paciente , Guias de Prática Clínica como Assunto , Padrões de Referência , Inquéritos e Questionários , Revisões Sistemáticas como Assunto , ConfiançaRESUMO
BACKGROUND: Providing patients with recordings of their clinic visits enhances patient and family engagement, yet few organizations routinely offer recordings. Challenges exist for organizations and patients, including data safety and navigating lengthy recordings. A secure system that allows patients to easily navigate recordings may be a solution. OBJECTIVE: The aim of this project is to develop and test an interoperable system to facilitate routine recording, the Open Recording Automated Logging System (ORALS), with the aim of increasing patient and family engagement. ORALS will consist of (1) technically proficient software using automated machine learning technology to enable accurate and automatic tagging of in-clinic audio recordings (tagging involves identifying elements of the clinic visit most important to patients [eg, treatment plan] on the recording) and (2) a secure, easy-to-use Web interface enabling the upload and accurate linkage of recordings to patients, which can be accessed at home. METHODS: We will use a mixed methods approach to develop and formatively test ORALS in 4 iterative stages: case study of pioneer clinics where recordings are currently offered to patients, ORALS design and user experience testing, ORALS software and user interface development, and rapid cycle testing of ORALS in a primary care clinic, assessing impact on patient and family engagement. Dartmouth's Informatics Collaboratory for Design, Development and Dissemination team, patients, patient partners, caregivers, and clinicians will assist in developing ORALS. RESULTS: We will implement a publication plan that includes a final project report and articles for peer-reviewed journals. In addition to this work, we will regularly report on our progress using popular relevant Tweet chats and online using our website, www.openrecordings.org. We will disseminate our work at relevant conferences (eg, Academy Health, Health Datapalooza, and the Institute for Healthcare Improvement Quality Forums). Finally, Iora Health, a US-wide network of primary care practices (www.iorahealth.com), has indicated a willingness to implement ORALS on a larger scale upon completion of this development project. CONCLUSIONS: Upon the completion of this project we will have developed a novel recording system that will be ready for large-scale testing. Our long-term goal is for ORALS to seamlessly fit into a clinic's and patient's daily routine, increasing levels of patient engagement and transparency of care.
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PURPOSE: People with intellectual disabilities (ID) experience higher incidences of chronic health conditions, poorer health outcomes, and increased risk of premature death. Epilepsy is 20 times more common in people with ID than in the general population. It tends to be more difficult to diagnose, more severe, and more difficult to treat. Improving epilepsy self-management in this group is advocated in guidelines for best practice. However, few self-management interventions exist, and a robust examination of their effectiveness is missing. Our aim was to identify existing self-management interventions for epilepsy in people with ID and to analyze their impact. METHODS: A scoping review using Arksey and O'Malley's framework was conducted. Medline, EMBASE, CINAHL, PsycInfo, OpenSIGLE, the Cochrane Database of Systematic Reviews, and Web of Science were searched from inception until June 2015. Using a piloted charting tool, selected articles were thematically analyzed. RESULTS: An initial search identified 570 articles, of which five met the inclusion criteria. Pilot and randomized controlled feasibility study findings suggest that self-management interventions targeted at people with ID are acceptable to this population, improve epilepsy-related knowledge, improve seizure frequency, and show potential to improve quality of life. A randomised controlled trial of a self-management intervention is currently underway. CONCLUSION: Studies evaluating self-management interventions for people with epilepsy and ID are sparse. Our findings demonstrate the potential for self-management interventions to improve outcomes in this population. Controlled studies with comparable measures and longer follow-ups are needed to rigorously assess the impact of self-management interventions on this patient population.
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Epilepsia , Deficiência Intelectual , Autocuidado , Epilepsia/complicações , Epilepsia/diagnóstico , Epilepsia/terapia , Humanos , Deficiência Intelectual/complicações , Deficiência Intelectual/diagnóstico , Deficiência Intelectual/terapia , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
OBJECTIVE: Our aim in this study was to examine the competing interest policies and procedures of organisations who develop and maintain patient decision aids. DESIGN: Descriptive and thematic analysis of data collected from a cross-sectional survey of patient decision aid developer's competing interest policies and disclosure forms. RESULTS: We contacted 25 organisations likely to meet the inclusion criteria. 12 eligible organisations provided data. 11 organisations did not reply and 2 declined to participate. Most patient decision aid developers recognise the need to consider the issue of competing interests. Assessment processes vary widely and, for the most part, are insufficiently robust to minimise the risk of competing interests. Only half of the 12 organisations had competing interest policies. Some considered disclosure to be sufficient, while others imposed differing levels of exclusion. CONCLUSIONS: Patient decision aid developers do not have a consistent approach to managing competing interests. Some have developed policies and procedures, while others pay no attention to the issue. As is the case for clinical practice guidelines, increasing attention will need to be given to how the competing interests of contributors of evidence-based publications may influence materials, especially if they are designed for patient use.
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Conflito de Interesses , Técnicas de Apoio para a Decisão , Participação do Paciente , Confiança , Estudos Transversais , Revelação , Estudos de Avaliação como Assunto , Humanos , RiscoRESUMO
BACKGROUND: In 2004, the Institute for Healthcare Improvement's 100,000 Lives Campaign recommended that hospitals implement rapid response teams (RRTs) charged with identifying non-intensive care unit (ICU) patients at risk for rapid deterioration. Although RRTs are now in widespread use, there have been conflicting results regarding the impact of RRTs on hospital mortality and cardiopulmonary arrest. PURPOSE: To assess the effectiveness of RRTs on reducing hospital mortality and non-ICU cardiopulmonary arrest rates. DATA SOURCES: We conducted a systematic review using MEDLINE (1966-2014), Cochrane Central Register of Controlled Trials (1898-2014), Cumulative Index to Nursing and Allied Health Literature (1994-2014), and ClinicalTrials.gov (1997-2014) during October 2014. There were no constraints on language or publication status. DATA EXTRACTION: We included before-after studies, cohort studies, and cluster randomized trials that reported hospital mortality and/or non-ICU cardiopulmonary arrest for adults hospitalized in a non-ICU setting after the implementation of RRTs and/or medical emergency teams (METs). Data were extracted by 2 sets of 2 independent reviewers using a standardized data-collection form. Disagreements were resolved by a third reviewer. Authors were contacted to obtain any missing data. DATA SYNTHESIS: Our search identified 691 studies, of which 30 met criteria for inclusion in the analysis. Implementation of an RRT/MET was associated with a significant decrease in hospital mortality (relative risk [RR] = 0.88, 95% confidence interval [CI]: 0.83-0.93, I(2) = 86%, 3,478,952 admissions) and a significant decrease in the number of non-ICU cardiac arrests (RR = 0.62, 95% CI: 0.55-0.69, I(2) = 71%, 3,045,273 admissions). CONCLUSIONS: Implementation of an RRT/MET is associated with a reduction in both hospital mortality and non-ICU cardiopulmonary arrests. Journal of Hospital Medicine 2016;11:438-445. © 2016 Society of Hospital Medicine.