A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research

Abstract Background Although rare disease patients make up approximately 6–8% of all patients in Europe, it is often difficult to find the necessary expertise for diagnosis and care and the patient numbers needed for rare disease research. The second French National Plan for Rare Diseases highlighted the necessity for better care coordination and epidemiology for rare diseases. A clinical data standard for normalization and exchange of rare disease patient data was proposed. The original methodology used to build the French national minimum data set (F-MDS-RD) common to the 131 expert rare disease centers is presented. Methods To encourage consensus at a national level for homogeneous data collection at the point of care for rare disease patients, we first identified four national expert groups. We reviewed the scientific literature for rare disease common data elements (CDEs) in order to build the first version of the F-MDS-RD. The French rare disease expert centers validated the data elements (DEs). The resulting F-MDS-RD was reviewed and approved by the National Plan Strategic Committee. It was then represented in an HL7 electronic format to maximize interoperability with electronic health records. Results The F-MDS-RD is composed of 58 DEs in six categories: patient, family history, encounter, condition, medication, and questionnaire. It is HL7 compatible and can use various ontologies for diagnosis or sign encoding. The F-MDS-RD was aligned with other CDE initiatives for rare diseases, thus facilitating potential interconnections between rare disease registries. Conclusions The French F-MDS-RD was defined through national consensus. It can foster better care coordination and facilitate determining rare disease patients’ eligibility for research studies, trials, or cohorts. Since other countries will need to develop their own standards for rare disease data collection, they might benefit from the methods presented here.

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A Minimum Data Set for Home Health Care: State Data Collection Tools

State and Local Government Review ◽

10.1177/0160323x9803000306 ◽

1998 ◽

Vol 30 (3) ◽

pp. 205-212

Author(s):

Bonnie Faherty ◽

Marisue Cody ◽

Patricia Carter

Keyword(s):

Health Care ◽

Data Collection ◽

Home Health Care ◽

Home Health ◽

Minimum Data Set ◽

Data Set ◽

State Data ◽

Minimum Data

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Proposing a Minimum Data Set for Mass Gathering Health

Prehospital and Disaster Medicine ◽

10.1017/s1049023x19000980 ◽

2019 ◽

Vol 34 (s1) ◽

pp. s40-s41

Author(s):

Malinda Steenkamp ◽

Paul Arbon ◽

Adam Lund ◽

Sheila Turris ◽

Jamie Ranse ◽

...

Keyword(s):

Public Health ◽

Minimum Data Set ◽

Data Repository ◽

Mass Gathering ◽

Data Set ◽

Mass Gatherings ◽

Modified Delphi ◽

Minimum Data ◽

Safety Considerations ◽

Data Elements

Introduction:There is currently no standardized approach to collecting mass gathering health data, which makes comparisons across or between events challenging. From 2013 onward, an international team of researchers from Australia and Canada collaborated to develop a Minimum Data Set (MDS) for Mass Gathering Health (MGH).Aim:The process of developing the MDS has been reported on previously at the 2015 and 2017 World Congresses on Disaster and Emergency Medicine, and this presentation will present a final MDS on MGH.Methods:This study drew from literature, including the 2015 Public Health for Mass Gatherings key considerations, previous event/patient registry development, expert input, and the results of the team’s work. The authors developed an MDS framework with the aim to create an online MGH data repository. The framework was populated with an initial list of data elements using a modified Delphi technique.Results:The MDS includes the 41 data elements in the following domains: community characteristics, event characteristics, venue characteristics, crowd characteristics, event safety considerations, public health considerations, and health services. Also included are definitions and preliminary metadata.Discussion:The development of an MGH-MDS can grow the science underpinning this emerging field. Future input from the international community is essential to ensure that the proposed MDS is fit-for-purpose, i.e., systematic, comprehensive, and rigorous, while remaining fluid and relevant for various users and contexts.

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Essential Data Elements for Electronic Cardiovascular Medical Record Systems in Iran

Frontiers in Health Informatics ◽

10.30699/fhi.v10i1.252 ◽

2021 ◽

Vol 10 (1) ◽

pp. 54

Author(s):

Abbas Sheikhtaheri ◽

Farid Khorami ◽

Hedyeh Mohammadzadeh

Keyword(s):

Medical Record ◽

Electronic Medical Records ◽

Medical Records ◽

Clinical Signs ◽

Minimum Data Set ◽

Nursing Interventions ◽

Data Set ◽

Minimum Data ◽

Physical Examinations ◽

Data Elements

Introduction: Electronic medical records play an important role in the management of patients. In order to develop cardiovascular electronic medical record systems, determining minimum data set is necessary. This study aimed to determine the essential data elements for electronic cardiovascular medical record systems.Methods: Medical records of patients with cardiovascular diseases and also the literature were reviewed to develop a questionnaire regarding the data elements. 87 cardiovascular specialists and residents as well as 50 nurses working in cardiovascular departments of hospitals affiliated with Iran University of Medical Sciences participated in the study. The data elements with at least 75% of agreement were considered essential for electronic medical records. Data were analyzed using descriptive statistics in SPSS software.Results: The essential data elements were classified in 29 classes including admission, death, patients’ main complaints, clinical signs, observations, medications, cardiac surgery, risk factors, laboratory and pathology results, consultation, resuscitation, anesthetic, electrocardiography, blood transfusion or blood products, rehabilitation measures, angiography/venography, exercise testing, endoscopy/colonoscopy, medical imaging, echocardiography, nursing interventions, allergies and side effects, therapeutic implantations, cardiac examinations, physical examinations, angina, referrals, social backgrounds and history., Totally, out of 276 data elements, 245 elements were identified as the essential data elements for electronic cardiovascular medical record systems.Conclusion: In this study, essential data elements were defined for electronic cardiovascular medical records. Identifying cardiovascular minimum data set will be an effective step towards integrating and improving the management of these patients' information.

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A Proposal for an Austrian Nursing Minimum Data Set (NMDS)

Applied Clinical Informatics ◽

10.4338/aci-2014-04-ra-0027 ◽

2014 ◽

Vol 05 (02) ◽

pp. 538-547 ◽

Cited By ~ 6

Author(s):

W.O. Hackl ◽

E. Ammenwerth ◽

R. Ranegger

Keyword(s):

Delphi Study ◽

Medical Condition ◽

Group Discussion ◽

Minimum Data Set ◽

Data Sets ◽

Nursing Assessment ◽

Data Set ◽

Nursing Outcomes ◽

Minimum Data ◽

Data Elements

SummaryObjective: Nursing Minimum Data Sets can be used to compare nursing care across clinical populations, settings, geographical areas, and time. NMDS can support nursing research, nursing management, and nursing politics. However, in contrast to other countries, Austria does not have a unified NMDS. The objective of this study is to identify possible data elements for an Austrian NMDS.Methods: A two-round Delphi survey was conducted, based on a review of available NMDS, 22 expert interviews, and a focus group discussion.Results: After reaching consensus, the experts proposed the following 56 data elements for an NMDS: six data elements concerning patient demographics, four data elements concerning data of the healthcare institution, four data elements concerning patient’s medical condition, 20 data elements concerning patient problems (nursing assessment, nursing diagnoses, risk assessment), eight data elements concerning nursing outcomes, 14 data elements concerning nursing interventions, and no additional data elements concerning nursing intensity.Conclusion: The proposed NMDS focuses on the long-term and acute care setting. It must now be implemented and tested in the nursing practice.Citation: Ranegger R, Hackl WO, Ammenwerth E. A proposal for an austrian nursing minimum data set (NMDS): A Delphi study. Appl Clin Inf 2014; 5: 538–547 http://dx.doi.org/10.4338/ACI-2014-04-RA-0027

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Minimum data set development for a drug poisoning registry system

Digital Health ◽

10.1177/2055207619897155 ◽

2019 ◽

Vol 5 ◽

pp. 205520761989715 ◽

Cited By ~ 1

Author(s):

Sadrieh Hajesmaeel-Gohari ◽

Kambiz Bahaadinbeigy ◽

Shahrad Tajoddini ◽

Sharareh R Niakan Kalhori

Keyword(s):

Healthcare Providers ◽

Data Gathering ◽

Initial Step ◽

Minimum Data Set ◽

Cross Sectional ◽

Data Set ◽

Drug Poisoning ◽

Minimum Data ◽

Registry System ◽

Data Elements

Objective Drug poisoning is the most prevalent type of poisoning throughout the world that can occur intentional or unintentional. Standard way for data gathering with uniform definitions is a requirement for preventing, controlling and managing of drug poisoning management. The purpose of this study was to develop a minimum data set, as an initial step, for a drug poisoning registry system in Iran. Methods This was descriptive and cross-sectional study that was performed in 2019. As the first step a comprehensive literature review was performed to retrieve related resources in Persian and English languages. For the second step the medical records of drug poisoning patients at Afzalipour hospital affiliated to Kerman University of Medical Sciences were assessed. Related data from these two steps were gathered by a checklist. Finally, a questionnaire that was created based on the checklist data elements and had three columns of ‘essential,' ‘useful, but not essential', and ‘not essential' was used to reach a consensus on the data elements. Then the content validity ratio and the mean of experts’ judgments were calculated for each data element. The Cronbach’s alpha value for the entire questionnaire was obtained 0.9. Results The minimum data set of a drug poisoning registry system was categorised into the administrative part with three sections including 32 data elements, and clinical parts with six sections including 81 data elements. Conclusion This study provides a minimum data set for development of a drug poisoning registry system. Collecting this minimum data set is critical for helping policy makers and healthcare providers to prevent, control and manage drug poisoning.

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The Minimum Data Set and Quality Indicators for National Healthcare-Associated Infection Surveillance in Mainland China: Towards Precision Management

BioMed Research International ◽

10.1155/2019/2936264 ◽

2019 ◽

Vol 2019 ◽

pp. 1-7

Author(s):

Hongwu Yao ◽

Jijiang Suo ◽

Yubin Xing ◽

Mingmei Du ◽

Yanling Bai ◽

...

Keyword(s):

Quality Indicators ◽

Surveillance System ◽

Minimum Data Set ◽

Healthcare Associated Infection ◽

Process Data ◽

Data Set ◽

Minimum Data ◽

Precision Management ◽

Data Elements ◽

Healthcare Associated

The magnitude and scope of the healthcare-associated infections (HCAIs) burden are underestimated worldwide, and have raised public concerns for their adverse effect on patient safety. In China, HCAIs still present an unneglected challenge and economic burden in recent decades. With the purpose of reducing the HCAI prevalence and enhancing precision management, China’s National Nosocomial Infection Management and Quality Control Center (NNIMQCC) had developed a Minimum Data Set (MDS) and corresponding Quality Indicators (QIs) for establishing national HCAI surveillance system, the data elements of which were repeatedly discussed, investigated, and confirmed by consensus of the expert team. The total number of data elements in MDS and QIs were 70 and 64, and they were both classified into seven categorical items. The NNIMQCC also had started two pilot projects to inspect the applicability, feasibility, and reliability of MDS. After years of hard work, more than 400 health facilities in 14 provinces have realized the importance of HCAI surveillance and contributed to developing an ability of exporting automatically standardized data to meet the requirement of MDS and participate in the regional surveillance system. Generally, the emergence of MDS and QIs in China indicates the beginning of the national HCAI surveillance based on information technology and computerized process data. The establishment of MDS aimed to use electronic health process data to ensure the data accuracy and comparability and to provide instructive and ongoing QIs to estimate and monitor the burden of HCAIs, and to evaluate the effects of interventions and direct health policy decision-making.

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Information Management in Cancer Registries: Evaluating the Needs for Cancer Data Collection and Cancer Research

Online Journal of Public Health Informatics ◽

10.5210/ojphi.v7i2.5664 ◽

2015 ◽

Vol 7 (2) ◽

Cited By ~ 2

Author(s):

Iris Zachary ◽

Suzanne A Boren ◽

Eduardo Simoes ◽

Jeannette Jackson-Thompson ◽

J. Wade Davis ◽

...

Keyword(s):

Public Health ◽

Data Collection ◽

Cancer Registry ◽

Cancer Registries ◽

Registry Data ◽

Data Set ◽

Common Data Elements ◽

Cancer Registry Data ◽

Treatment Data ◽

Data Elements

Cancer registry data collection involves, at a minimum, collecting data on demographics, tumor characteristics, and treatment. A common, identified, and standardized set of data elements is needed to share data quickly and efficiently with consumers of this data. This project highlights the fact that, there is a need to develop common data elements; Surveys were developed for central cancer registries (CCRs) and cancer researchers (CRs) at NCI-designated Cancer Centers, in order to understand data needs. Survey questions were developed based on the project focus, an evaluation of the research registries and database responses, and systematic review of the literature. Questions covered the following topics: 1) Research, 2) Data collection, 3) Database/ repository, 4) Use of data, 5) Additional data items, 6) Data requests, 7) New data fields, and 8) Cancer registry data set. A review of the surveys indicates that all cancer registries’ data are used for public health surveillance, and 96% of the registries indicate the data are also used for research. Data are available online in interactive tables from over 50% of CRs and 87% of CCRs. Some other survey responses indicate that CCR treatment data are not complete for example treatment data, however cancer researchers are interested in treatment variables from CCRs. Cancer registries have many data available for review, but need to examine what data are needed and used by different entities. Cancer Registries can further enhance usage through collaborations and partnerships to connect common interests in the data by making registries visible and accessible.Keywords: Public Health; Disease Registries; Disease Reporting

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A study to design minimum data set of COVID-19 registry system

BMC Infectious Diseases ◽

10.1186/s12879-021-06507-8 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Javad Zarei ◽

Mohammad Badavi ◽

Majid Karandish ◽

Maryam Haddadzadeh Shoushtari ◽

Maryam Dastoorpoor ◽

...

Keyword(s):

Minimum Data Set ◽

Second Phase ◽

Data Set ◽

Khuzestan Province ◽

Minimum Data ◽

Registry System ◽

System Data ◽

Southwestern Iran ◽

Data Elements ◽

Five Phases

Abstract Background From the beginning of the COVID-19 pandemic, the development of infrastructures to record, collect and report COVID-19‏ ‏data has become a fundamental necessity in the world. The disease registry system can help build an infrastructure to collect data systematically. The study aimed to design a minimum data set for the COVID-19 registry system. Methods A qualitative study to design an MDS for the COVID-19 registry system was performed in five phases at Ahvaz University of Medical Sciences in Khuzestan Province in southwestern Iran, 2020–2021. In the first phase, assessing the information requirements was performed for the COVID-19 registry system. Data elements were identified in the second phase. In the third phase, the MDS was selected, and in the four phases, the COVID-19 registry system was implemented as a pilot study to test the MDS. Finally, based on the experiences gained from the COVID-19 registry system implementation, the MDS were evaluated, and corrections were made. Results MDS of the COVID-19 registry system contains eight top groups including administrative (34 data elements), disease exposure (61 data elements), medical history and physical examination (138 data elements), findings of clinical diagnostic tests (101 data elements), disease progress and outcome of treatment (55 data elements), medical diagnosis and cause of death (12 data elements), follow-up (14 data elements), and COVID-19 vaccination (19 data elements) data, respectively. Conclusion Creating a standard and comprehensive MDS can help to design any national data dictionary for COVID-19 and improve the quality of COVID-19 data.

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Child abuse and neglect surveillance systems via minimum data set indicators

PsycEXTRA Dataset ◽

10.1037/e578482014-143 ◽

2013 ◽

Author(s):

Athanasios Ntinapogias ◽

George Nikolaidis

Keyword(s):

Child Abuse ◽

Child Abuse And Neglect ◽

Minimum Data Set ◽

Surveillance Systems ◽

Data Set ◽

Minimum Data ◽

Abuse And Neglect

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State Medical Boards' Perceptions of a Minimum Data Set and Current Practices for Collecting Physician Information

Journal of Medical Regulation ◽

10.30770/2572-1852-99.4.40 ◽

2013 ◽

Vol 99 (4) ◽

pp. 40-45 ◽

Cited By ~ 1

Author(s):

Aaron Young ◽

Philip Davignon ◽

Margaret B. Hansen ◽

Mark A. Eggen

Keyword(s):

Media Coverage ◽

The United States ◽

Minimum Data Set ◽

Direct Patient Care ◽

Physician Workforce ◽

Data Set ◽

Minimum Data ◽

State Medical Boards ◽

The Impact ◽

Current Practices

ABSTRACT Recent media coverage has focused on the supply of physicians in the United States, especially with the impact of a growing physician shortage and the Affordable Care Act. State medical boards and other entities maintain data on physician licensure and discipline, as well as some biographical data describing their physician populations. However, there are gaps of workforce information in these sources. The Federation of State Medical Boards' (FSMB) Census of Licensed Physicians and the AMA Masterfile, for example, offer valuable information, but they provide a limited picture of the physician workforce. Furthermore, they are unable to shed light on some of the nuances in physician availability, such as how much time physicians spend providing direct patient care. In response to these gaps, policymakers and regulators have in recent years discussed the creation of a physician minimum data set (MDS), which would be gathered periodically and would provide key physician workforce information. While proponents of an MDS believe it would provide benefits to a variety of stakeholders, an effort has not been attempted to determine whether state medical boards think it is important to collect physician workforce data and if they currently collect workforce information from licensed physicians. To learn more, the FSMB sent surveys to the executive directors at state medical boards to determine their perceptions of collecting workforce data and current practices regarding their collection of such data. The purpose of this article is to convey results from this effort. Survey findings indicate that the vast majority of boards view physician workforce information as valuable in the determination of health care needs within their state, and that various boards are already collecting some data elements. Analysis of the data confirms the potential benefits of a physician minimum data set (MDS) and why state medical boards are in a unique position to collect MDS information from physicians.

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