scholarly journals Health Data Processes: A Framework for Analyzing and Discussing Efficient Use and Reuse of Health Data With a Focus on Patient-Reported Outcome Measures (Preprint)

2018 ◽  
Author(s):  
Niels Henrik Ingvar Hjollund ◽  
José Maria Valderas ◽  
Derek Kyte ◽  
Melanie Jane Calvert
Keyword(s):  
Health Care ◽  
Data Collection ◽  
Health Care System ◽  
Personal Data ◽  
Patient Reported Outcome ◽  
Health Data ◽  
Data Availability ◽  
Data Process ◽  
Patient Reported ◽  
Care System

UNSTRUCTURED The collection and use of patient health data are central to any kind of activity in the health care system. These data may be produced during routine clinical processes or obtained directly from the patient using patient-reported outcome (PRO) measures. Although efficiency and other reasons justify data availability for a range of potentially relevant uses, these data are nearly always collected for a single specific purpose. The health care literature reflects this narrow scope, and there is limited literature on the joint use of health data for daily clinical use, clinical research, surveillance, and administrative purposes. The aim of this paper is to provide a framework for discussing the efficient use of health data with a specific focus on the role of PRO measures. PRO data may be used at an individual patient level to inform patient care or shared decision making and to tailor care to individual needs or group-level needs as a complement to health record data, such as that on mortality and readmission, in order to inform service delivery and measure the real-world effectiveness of treatment. PRO measures may be used either for their own sake, to provide valuable information from the patient perspective, or as a proxy for clinical data that would otherwise not be feasible to collect. We introduce a framework to analyze any health care activity that involves health data. The framework consists of four data processes (patient identification, data collection, data aggregation and data use), further structured into two dichotomous dimensions in each data process (level: group vs patient; timeframe: ad hoc vs systematic). This framework is used to analyze various health activities with respect to joint use of data, considering the technical, legal, organizational, and logistical challenges that characterize each data process. Finally, we propose a model for joint use of health data with data collected during follow-up as a base. Demands for health data will continue to increase, which will further add to the need for the concerted use and reuse of PRO data for parallel purposes. Repeated and uncoordinated PRO data collection for the same patient for different purposes results in misuse of resources for the patient and the health care system as well as reduced response rates owing to questionnaire fatigue. PRO data can be routinely collected both at the hospital (from inpatients as well as outpatients) and outside of hospital settings; in primary or social care settings; or in the patient’s home, provided the health informatics infrastructure is in place. In the future, clinical settings are likely to be a prominent source of PRO data; however, we are also likely to see increased remote collection of PRO data by patients in their own home (telePRO). Data collection for research and quality surveillance will have to adapt to this circumstance and adopt complementary data capture methods that take advantage of the utility of PRO data collected during daily clinical practice. The European Union’s regulation with respect to the protection of personal data—General Data Protection Regulation—imposes severe restrictions on the use of health data for parallel purposes, and steps should be taken to alleviate the consequences while still protecting personal data against misuse.

Patient-reported unfair treatment within the health care system.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 115-115
Author(s):  
Nicole E. Caston ◽  
Courtney Williams ◽  
Kathleen D. Gallagher ◽  
Rebekah Angove ◽  
Eric Anderson ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care System ◽  
Categorical Variables ◽  
Medical Mistrust ◽  
Insurance Company ◽  
Medical Providers ◽  
Unfair Treatment ◽  
Patient Reported ◽  
Race Ethnicity ◽  
Care System

115 Background: Patients with cancer who perceive discrimination and unfair treatment from the health care system are at risk for lower health-related quality of life. This study seeks to better understand the characteristics of under-resourced patients who report unfair treatment from the health care system and providers. Methods: This cross-sectional analysis used data from a nationwide survey distributed in December 2020 by Patient Advocate Foundation (PAF), a US non-profit organization providing case management and financial aid to individuals with chronic illness. The survey was fielded via email to those who received PAF services from July 2019-April 2020. Inclusion criteria included a valid e-mail address, aged ≥ 19, and either current or previous cancer treatment. Respondents reported unfair treatment in connection to their health care. Age, sex, race/ethnicity, and annual household income were abstracted from the PAF database. The validated Group-Based Medical Mistrust Scale was used to assess respondents’ level of mistrust in medical providers as it relates to their ethnic group. Scores range from 12-60 and were categorized based on tertiles as high mistrust (scores ≥ 29), neutral (21-28), and low mistrust (≤ 20). Frequencies and percentages were calculated for categorical variables. Results: There were a total of 429 survey respondents with cancer. Most respondents were female (73%) and aged 56-75 (57%); 31% were Black, Indigenous, or Persons of Color (BIPOC). The most common cancer types were hematologic (33%) and breast (33%). Overall, 20% (n = 86) of respondents reported having received unfair treatment. Of those reporting unfair treatment, 56% reported receipt from their doctor, nurse, or health care provider, 51% insurance company, 38% the health care system, and 14% pharmacist. When asked why they felt unfairly treated, the most common responses were related to insurance status (51%), disease or condition (45%), and income (35%). Notably, unfair treatment due to race/ethnicity (6%), sex (9%), and sexual orientation/gender expression (3%) were uncommon. When compared to those who reported objective treatment, respondents reporting unfair treatment were more often unemployed/other (28% vs 11%), privately insured (38% vs 27%), having income < $23,000 (40% vs 25%), having 3+ comorbidities (40% vs 23%) and reporting more mistrust in medical providers (53% vs 27%). There did not appear to be a difference in reporting of unfair treatment by race/ethnicity. Of BIPOC respondents, 51% reported high mistrust in medical providers. Conclusions: This under-resourced population of respondents with cancer reported unfair treatment related to their finances, insurance, and disease status. Our data suggest health care-associated discrimination may occur based on socioeconomic resources. This work identifies a novel equity consideration warranting further evaluation.

scholarly journals Patient characteristics associated with the level of patient-reported care coordination among male patients with colorectal cancer in the Veterans Affairs health care system

Cancer ◽  
2015 ◽  
Vol 121 (13) ◽  
pp. 2207-2213 ◽  
Author(s):  
George L. Jackson ◽  
Leah L. Zullig ◽  
Sean M. Phelan ◽  
Dawn Provenzale ◽  
Joan M. Griffin ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Health Care ◽  
Health Care System ◽  
Care Coordination ◽  
Patient Characteristics ◽  
Veterans Affairs ◽  
Patient Reported ◽  
Male Patients ◽  
Care System

scholarly journals From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients

10.2196/13022 ◽  
2019 ◽  
Vol 21 (8) ◽  
pp. e13022 ◽  
Author(s):  
Therese Scott Duncan ◽  
Sara Riggare ◽  
Sabine Koch ◽  
Lena Sharp ◽  
Maria Hägglund
Keyword(s):  
Health Care ◽  
Health Care System ◽  
Chronic Conditions ◽  
First Generation ◽  
Second Generation ◽  
Informal Caregivers ◽  
Self Care ◽  
Health Data ◽  
Web Based ◽  
Care System

Background Current health care systems are rarely designed to meet the needs of people living with chronic conditions. However, some patients and informal caregivers are not waiting for the health care system to redesign itself. These individuals are sometimes referred to as e-patients. The first generation of e-patients used the internet for finding information and for communicating with peers. Compared with the first generation, the second generation of e-patients collects their own health data and appears to be more innovative. Objective The aim of this study was to describe the second generation of e-patients through exploration of their active engagement in their self-care and health care. Methods Semistructured interviews were conducted with 10 patients with chronic conditions and 5 informal caregivers. They were all recruited through a Web-based advertisement. Data were analyzed according to the framework analysis approach, using the 3 concepts of the self-determination theory—autonomy, relatedness, and competence—at the outset. Results Study participants were actively engaged in influencing their self-care and the health care system to improve their own health, as well as the health of others. This occurred at different levels, such as using their own experience when giving presentations and lectures to health care professionals and medical students, working as professional peers in clinical settings, performing self-tracking, contributing with innovations, and being active on social media. When interaction with health care providers was perceived as being insufficient, the participants sought support through their peers, which showed strong relatedness. Competence increased through the use of technology and learning experiences with peers. Their autonomy was important but was sometimes described as involuntary and to give up was not an option for them. Conclusions Like the first generation of e-patients, the participants frequently searched for Web-based information. However, the second generation of e-patients also produce their own health data, which they learn from and share. They also engage in the innovation of digital tools to meet health-related needs. Utilizing technological developments comes naturally to the second generation of e-patients, even if the health care system is not prepared to support them under these new circumstances.

scholarly journals Collection and use of EQ-5D for follow-up, decision-making, and quality improvement in health care - the case of the Swedish National Quality Registries

2020 ◽  
Vol 4 (1) ◽  
Author(s):  
Olivia Ernstsson ◽  
Mathieu F. Janssen ◽  
Emelie Heintz
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Quality Improvement ◽  
Health Care System ◽  
Swedish Health Care ◽  
National Quality ◽  
Patient Reported ◽  
Different Levels ◽  
Care System

Abstract Background The Swedish National Quality Registries (NQRs) contain individual-level health care data for specific patient populations, or patients receiving specific interventions. Approximately 90% of the 105 Swedish NQRs include any patient-reported outcome measure, with EQ-5D being the most common. As there has been no general overview of EQ-5D data within the NQRs, this study fills a knowledge gap by reporting how the data are collected, presented, and used at different levels of the Swedish health care system. Methods All 46 NQRs with a license for the use of EQ-5D were included. Information was retrieved from the registries’ annual reports or from websites, using a template that was subsequently sent to each registry for completion and confirmation. If considered necessary, the contact was followed-up with an interview, either in-person or over the telephone. The uses of EQ-5D were categorised as denoting usage for follow-up, decision-making, or quality improvement in Swedish health care. Results In total, 41 of the 46 licensed registries reported collection of EQ-5D data. EQ-5D is most commonly collected within registries related to the musculoskeletal system, but it has a wide application also in other disease areas. Thirty-six registries provide EQ-5D results to patients, clinicians, or other decision-makers. Twenty-two of the registries reported that EQ-5D data are being used for follow-up, decision-making or quality improvement. The registries most commonly reported use of data for assessing interventions, and in quality indicators to follow-up the quality of care at a national level. Conclusion Collection and use of EQ-5D data vary across the Swedish NQRs, which may partly be accounted for by the different purposes of the registries. The provided examples of use illustrate how EQ-5D data can inform decisions at different levels of the health care system. However, there is potential for improving the use of EQ-5D data.

Privacy protection laws and public perception of data privacy

2018 ◽  
Vol 25 (6) ◽  
pp. 1883-1902 ◽  
Author(s):  
Jawahitha Sarabdeen ◽  
Immanuel Azaad Moonesar
Keyword(s):  
Health Care ◽  
Content Analysis ◽  
Health Care System ◽  
Data Protection ◽  
Privacy Protection ◽  
Data Privacy ◽  
Health Data ◽  
Content Type ◽  
Care System ◽  
Laws And Regulations

Purpose The move toward e-health care in various countries is envisaged to reduce the cost of provision of health care, improve the quality of care and reduce medical errors. The most significant problem is the protection of patients’ data privacy. If the patients are reluctant or refuse to participate in health care system due to lack of privacy laws and regulations, the benefit of the full-fledged e-health care system cannot be materialized. The purpose of this paper is to investigate the available e-health data privacy protection laws and the perception of the people using the e-health care facilities. Design/methodology/approach The researchers used content analysis to analyze the availability and comprehensive nature of the laws and regulations. The researchers also used survey method. Participants in the study comprised of health care professionals (n=46) and health care users (n=187) who are based in the Dubai, United Arab Emirates. The researchers applied descriptive statistics mechanisms and correlational analysis to analyze the data in the survey. Findings The content analysis revealed that the available health data protection laws are limited in scope. The survey results, however, showed that the respondents felt that they could trust the e-health services systems offered in the UAE as the data collected is protected, the rights are not violated. The research also revealed that there was no significance difference between the nationality and the privacy data statements. All the nationality agreed that there is protection in place for the protection of e-health data. There was no significance difference between the demographic data sets and the many data protection principles. Originality/value The findings on the users’ perception could help to evaluate the success in realizing current strategies and an action plan of benchmarking could be introduced.

scholarly journals Patient-Reported Outcomes Following Surgery for Lumbar Disc Herniation: Comparison of a Universal and Multitier Health Care System

2021 ◽  
pp. 219256822110469
Author(s):  
Oliver GS Ayling ◽  
Tamir Ailon ◽  
Michael Craig ◽  
Nicolas Dea ◽  
Greg McIntosh ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care System ◽  
Lumbar Disc Herniation ◽  
Disc Herniation ◽  
Lumbar Disc ◽  
Universal Health Care ◽  
Universal Health Care System ◽  
Patient Reported ◽  
Universal Health ◽  
Care System

Study Design Ambispective cohort study. Objective Canada has a government-funded universal health care system. The United States utilizes a multitier public and private system. The objective is to investigate differences in clinical outcomes between those surgically treated for lumbar disc herniation in a universal health care and multitier health system. Methods Surgical lumbar disc herniation patients enrolled in the Canadian Spine Outcome Research Network (CSORN) were compared with the surgical cohort enrolled in the Spine Patients Outcome Research Trial (SPORT) study. Baseline demographics and spine-related patient-reported outcomes (PROs) were compared at 3 months and 1 year post-operatively. Results The CSORN cohort consisted of 443 patients; the SPORT cohort had 763 patients. Patients in the CSORN cohort were older (46.4 ± 13.5 vs 41.0 ± 10.8, P < .001) and were more likely to be employed (69.5% vs 60.3%, P = .003). The CSORN cohort demonstrated significantly greater rates of satisfaction after surgery at 3 months (87.2% vs 64.8%, P < .0001) and 1 year (85.6% vs 69.6%, P < .0001). Improvements in back and leg pain followed similar trajectories in the two cohorts, but there was less improvement on ODI in the CSORN cohort ( P < .01). On multivariable logistic regression, the CSORN cohort was a significant independent predictor of patient satisfaction at 1-year follow-up ( P < .001). Conclusions Despite less improvement on ODI, patients enrolled in CSORN, as part of a universal health care system, reported higher rates of satisfaction at 3 months and 1 year post-operatively compared to patients enrolled within a multitier health system.

scholarly journals Patient-Reported Outcome Measures of Utilizing Person-Generated Health Data in the Case of Simulated Stroke Rehabilitation: Development Method

10.2196/16827 ◽  
2020 ◽  
Vol 9 (5) ◽  
pp. e16827 ◽  
Author(s):  
Gerardo Luis Dimaguila ◽  
Kathleen Gray ◽  
Mark Merolli
Keyword(s):  
Health Care ◽  
Outcome Measures ◽  
Clinical Work ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Data ◽  
Health Conditions ◽  
Evidence Based ◽  
Development Method ◽  
Patient Reported

Background Person-generated health data (PGHD) are health data that people generate, record, and analyze for themselves. Although the health benefits of PGHD use have been reported, there is no systematic way for patients to measure and report the health effects they experience from using their PGHD. Patient-reported outcome measures (PROMs) allow patients to systematically self-report their outcomes of a health care service. They generate first-hand evidence of the impact of health care services and are able to reflect the real-world diversity of actual patients and management approaches. Therefore, this paper argues that a PROM of utilizing PGHD, or PROM-PGHD, is necessary to help build evidence-based practice in clinical work with PGHD. Objective This paper aims to describe a method for developing PROMs for people who are using PGHD in conjunction with their clinical care—PROM-PGHD, and the method is illustrated through a case study. Methods The five-step qualitative item review (QIR) method was augmented to guide the development of a PROM-PGHD. However, using QIR as a guide to develop a PROM-PGHD requires additional socio-technical consideration of the PGHD and the health technologies from which they are produced. Therefore, the QIR method is augmented for developing a PROM-PGHD, resulting in the PROM-PGHD development method. Results A worked example was used to illustrate how the PROM-PGHD development method may be used systematically to develop PROMs applicable across a range of PGHD technology types used in relation to various health conditions. Conclusions This paper describes and illustrates a method for developing a PROM-PGHD, which may be applied to many different cases of health conditions and technology categories. When applied to other cases of health conditions and technology categories, the method could have broad relevance for evidence-based practice in clinical work with PGHD.

Dynamics of a specialized and complex health care system: Exploring general practitioners’ management of multimorbidity

2020 ◽  
pp. 174239532092840
Author(s):  
Nina Konstantin Nissen ◽  
Rikke Aarhus ◽  
Lisbeth Ørtenblad
Keyword(s):  
Health Care ◽  
Data Collection ◽  
General Practitioners ◽  
Health Care System ◽  
Participant Observation ◽  
Qualitative Interviews ◽  
Analytical Framework ◽  
Extraction Methods ◽  
Multimorbid Patients ◽  
Care System

Objective To explore general practitioners’ (GPs’) experiences of cooperation with hospital-based physicians regarding multimorbid patients and to identify challenges as well as strategies in managing such challenges. Study setting: Three medical practices in a provincial town in Denmark. Study design A qualitative methodological design was used with explorative data collection among GPs. Data collection/Extraction methods: Participant observation, qualitative interviews and a focus group interview were conducted. Interpretive description was used as the analytical framework. Principal findings: The GPs appreciated cooperating with physicians in optimizing treatment of multimorbid patients. However, three main challenges were experienced: insufficient communication and coordination; unclear divisions of roles and responsibilities; and differences in the way of approaching patients. The GPs navigated these challenges and complexities by taking advantage of their personal relationships and by developing creative and patient-centred ad hoc solutions to difficulties in cross-sectorial cooperation. A hospital initiative to support care for multimorbid patients has not been adopted by the GPs as a preferred strategy. Conclusions The structures of the health care system severely challenged cooperation regarding multimorbid patients; nevertheless, these GPs were aware of the advantages of cooperation, and their mainstay strategy in this involved personalized solutions and flexibility.

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