During the workshop, the Trillium II project was presented to the audience as well as the state of patient summaries in Denmark and the US. Furthermore, the results of a survey on use of patient summaries in disaster and relief situations were presented.
The purpose of the workshop was to promote the project and the Global Community for Digital Health Innovation and collect feedback on the participants’ attitude towards patient summaries.
The workshop participants were invited to discuss which patient summary use cases they considered most relevant for the Trillium II project to focus on and how an international patient summary should be governed.
SNIIRAM: PRIMARY AND SECONDARY CARE RESOURCE USE IN FRANCEZoe Mitchell
This document summarizes information from the SNIIRAM database in France. It discusses:
- SNIIRAM is a national database containing medical claims data from primary, secondary, and tertiary care.
- It allows linkage of data between different levels of care to study patient pathways.
- Examples of studies using SNIIRAM data include analyzing inhaled corticosteroid use patterns in asthma patients, comparing effectiveness of allergen immunotherapy in children with rhinitis, and assessing montelukast's impact on asthma control in infants.
CHC15 - EHR adoption in a european environment and public management hospital...Carlos Sousa
SOURCE:
Invited speaker for CERNER HEALTH CONFERENCE, Educational Session, held during Oct 11-14 in Kansas City (MO) - US.
ABSTRACT:
After 13 years under private management, Hospital Prof. Fernando da Fonseca (HFF) committed to invest a solid EHR strategic approach aligned with best practices, due to management shift as public management hospital within the NHS network. HFF focused on creating a Clinical Commission for information that could support and lead the change on workflow and mindset of the hospital culture. This team combines the knowledge and experience of multidisciplinary roles, designing a EHR model that fully responds to the needs. Thus ensuring a successful phased implementation which started in the emergency department and was then deployed throughout the rest of the hospital. After three years of project, the hospital has achieved a high level (superior to 85%) of EHR adoption and has proven outcomes in the delivery of quality of care and Social ROI (e.g. direct data interoperability with medical emergency before hospital admission, algorithm implementation to improve organ donor and collection, integration with private clinics for outsourcing auxiliary services, including Lab and radiology prescriptions and results/reports). HFF continues to strongly work on this project and are dedicated to implementing their roadmap with the short term aim of achieving HIMSS Stage 6.
This document discusses Denmark's national health registries and their use for epidemiological research. It notes that Denmark assigns unique personal identification numbers to all citizens, allowing accurate linkage between various health registries. This enables large population-based cohort studies with long-term follow up. The registries contain information on healthcare utilization, prescriptions, and diagnoses. Several studies are described that use the registries to study topics like MMR vaccination and autism, quality of diabetes care, and blood pressure control. Challenges with using registry data include ensuring validity of diagnoses and missing data. However, strengths include no selection bias, large sample sizes, and prospectively collected data.
Presentation from the 3rd Joint Meeting of the Antimicrobial Resistance and Healthcare-Associated Infections (ARHAI) Networks, organised by the European Centre of Disease Prevention and Control - Stockholm, 11-13 February 2015
Alström syndrome is a rare genetic disease characterized by childhood obesity, insulin resistance, and fibrosis of multiple organs. There are currently no approved treatments. PBI-4050, a drug candidate from Prometic being developed for fibrosis, has potential as a novel treatment for Alström syndrome given its multi-organ anti-fibrotic activity. An ongoing proof-of-concept study of PBI-4050 in the UK represents the first clinical trial in Alström syndrome patients. Regulatory pathways like orphan drug designation and the EMA's PRIME program aim to facilitate development of treatments for rare diseases by providing scientific advice, accelerated assessment, and incentives for further research.
This document provides an overview of healthcare standards and their importance. It begins with introductions of the presenter and their experience in US healthcare systems and standards organizations. It then discusses the size and costs of US healthcare, and issues like medical errors. It defines standards development organizations like HL7, SDOs important to healthcare like DICOM, SNOMED, and LOINC. It explains how standards are developed through consensus and describes primary types of healthcare IT standards. It discusses the impact of standards on healthcare and the absence of standards.
Introduction to disclosures in clinical trials. This presentation provides brief information about types of disclosures, FDAAA (www.clinicaltrials.gov) and EU (EudraCT) portals for clinical trial protocols and result summary disclosures in public domain.
SNIIRAM: PRIMARY AND SECONDARY CARE RESOURCE USE IN FRANCEZoe Mitchell
This document summarizes information from the SNIIRAM database in France. It discusses:
- SNIIRAM is a national database containing medical claims data from primary, secondary, and tertiary care.
- It allows linkage of data between different levels of care to study patient pathways.
- Examples of studies using SNIIRAM data include analyzing inhaled corticosteroid use patterns in asthma patients, comparing effectiveness of allergen immunotherapy in children with rhinitis, and assessing montelukast's impact on asthma control in infants.
CHC15 - EHR adoption in a european environment and public management hospital...Carlos Sousa
SOURCE:
Invited speaker for CERNER HEALTH CONFERENCE, Educational Session, held during Oct 11-14 in Kansas City (MO) - US.
ABSTRACT:
After 13 years under private management, Hospital Prof. Fernando da Fonseca (HFF) committed to invest a solid EHR strategic approach aligned with best practices, due to management shift as public management hospital within the NHS network. HFF focused on creating a Clinical Commission for information that could support and lead the change on workflow and mindset of the hospital culture. This team combines the knowledge and experience of multidisciplinary roles, designing a EHR model that fully responds to the needs. Thus ensuring a successful phased implementation which started in the emergency department and was then deployed throughout the rest of the hospital. After three years of project, the hospital has achieved a high level (superior to 85%) of EHR adoption and has proven outcomes in the delivery of quality of care and Social ROI (e.g. direct data interoperability with medical emergency before hospital admission, algorithm implementation to improve organ donor and collection, integration with private clinics for outsourcing auxiliary services, including Lab and radiology prescriptions and results/reports). HFF continues to strongly work on this project and are dedicated to implementing their roadmap with the short term aim of achieving HIMSS Stage 6.
This document discusses Denmark's national health registries and their use for epidemiological research. It notes that Denmark assigns unique personal identification numbers to all citizens, allowing accurate linkage between various health registries. This enables large population-based cohort studies with long-term follow up. The registries contain information on healthcare utilization, prescriptions, and diagnoses. Several studies are described that use the registries to study topics like MMR vaccination and autism, quality of diabetes care, and blood pressure control. Challenges with using registry data include ensuring validity of diagnoses and missing data. However, strengths include no selection bias, large sample sizes, and prospectively collected data.
Presentation from the 3rd Joint Meeting of the Antimicrobial Resistance and Healthcare-Associated Infections (ARHAI) Networks, organised by the European Centre of Disease Prevention and Control - Stockholm, 11-13 February 2015
Alström syndrome is a rare genetic disease characterized by childhood obesity, insulin resistance, and fibrosis of multiple organs. There are currently no approved treatments. PBI-4050, a drug candidate from Prometic being developed for fibrosis, has potential as a novel treatment for Alström syndrome given its multi-organ anti-fibrotic activity. An ongoing proof-of-concept study of PBI-4050 in the UK represents the first clinical trial in Alström syndrome patients. Regulatory pathways like orphan drug designation and the EMA's PRIME program aim to facilitate development of treatments for rare diseases by providing scientific advice, accelerated assessment, and incentives for further research.
This document provides an overview of healthcare standards and their importance. It begins with introductions of the presenter and their experience in US healthcare systems and standards organizations. It then discusses the size and costs of US healthcare, and issues like medical errors. It defines standards development organizations like HL7, SDOs important to healthcare like DICOM, SNOMED, and LOINC. It explains how standards are developed through consensus and describes primary types of healthcare IT standards. It discusses the impact of standards on healthcare and the absence of standards.
Introduction to disclosures in clinical trials. This presentation provides brief information about types of disclosures, FDAAA (www.clinicaltrials.gov) and EU (EudraCT) portals for clinical trial protocols and result summary disclosures in public domain.
What makes clinical trials in orphan indications so special?Sebastien Duval
Clinical trials in orphan indications have unique characteristics. Due to the rarity of these diseases, trials have small sample sizes, require many study sites, and proactive recruitment. They may justify placebos without concurrent treatment and open-label extensions. Motivated patients are willing to participate, but require proactive outreach. SynteractHCR has experience conducting over 90 rare disease trials in over 30 indications.
Similarities and differences between Rare Cancers and Rare Diseasesjangeissler
While rare cancers (RCs) and rare diseases (RDs) face many similar challenges due to their rarity, there are also some key differences:
- RDs impact a larger number of different conditions (around 6000) compared to RCs (198 known types), and RDs are defined by prevalence while RCs by incidence.
- A majority of both RCs and RDs are life-threatening, but RDs more often affect children compared to RCs.
- Both communities struggle with delays in diagnosis, limited research funding, and a need for specialized treatment centers and clinical guidelines. However, RCs can take more advantage of research on common cancers, while RDs are more heterogeneous.
The role of patients and healthcare providers in translational medicinejangeissler
The role of patients and healthcare providers in translational medicine, presented by Jan Geissler at the European Commission's Personalized Medicine Conference 2016 on 1 June 2016 in Brussels
The document outlines the World Health Organization's first edition of the Model List of Essential In Vitro Diagnostics (EDL). The EDL provides guidance to countries on selecting important diagnostic tests to address disease priorities based on their health systems and needs. The EDL lists general diagnostic tests and disease-specific tests for primary healthcare facilities and facilities with clinical laboratories. It is intended to complement the WHO Model List of Essential Medicines and help improve access to quality diagnostics globally. Selection of tests was based on disease burden, unmet needs, and priorities. The EDL provides information on test purpose, format, specimens, recommended facility level, and links to WHO guidance and prequalified products. Countries should consider local factors in adapting
Workshop 6 - Brainstorming & Policy Development session: Training, information and education of MDs
"Sharing expertise: transfer of experience from patient organizations to doctors and between patient
organisations"
Rainald von Gizycki, Retina Europe,
Germany
1. Generic PRO instrument
2. Disease specific
3. Population specific
4. Dimension specific
5. Individualized
6. Summary items
7. Utility measures
Full Information : https://bit.ly/2VmTrLs
Reference : https://pubrica.com/services/research-services/
Why pubrica?
When you order our services, we promise you the following – Plagiarism free, always on Time, outstanding customer support, written to Standard, Unlimited Revisions support and High-quality Subject Matter Experts.
Contact us :
Web: https://pubrica.com/
Blog: https://pubrica.com/academy/
Email: sales@pubrica.com
WhatsApp : +91 9884350006
United Kingdom: +44-74248 10299
Related Topics:
Literature gap and future research
Meta-Analysis in evidence-based research
Biostatistics in clinical research
Scientific Communication in healthcare
Tags:
Medical writing service | Scientific communication services | Scientific research services | Clinical trials | Publication services | Scientific Manuscript editing services
Presentation exploring the development of clinical trial registries and clinical trial results databases and their impact on the clinical study industry, including their challenges and the potential for creating new forms of liability.
Presentation carried out during the EMBC'16 conference in Orlando the 17th of August by Paulo Carvalho and Vicente Traver introducing the LINK project and the results of the first iteration with experts about the future opportunities and challenges for research on personalised health care for cardiovascular disease management.
Oral presentation ICC-PBM 2018 @ G-I-N conference Manchester (UK) 2018CEBaP_rkv
The document describes how an international consensus conference on patient blood management (ICC-PBM) integrated the GRADE approach and a formal consensus methodology. A scientific committee formulated 17 questions to guide 3 topics of interest. A 2-day conference included 200 medical experts from 10 disciplines who reviewed evidence using GRADE. It included open sessions for evidence presentation, discussion, and closed executive sessions where decision-making panels drafted recommendations. The process aimed to develop transparent, evidence-based consensus guidelines for optimizing patient blood management.
This document discusses clinical and economic analyses that were conducted on non-medical technologies in Russia. It summarizes two studies: 1) A study analyzing the cost-effectiveness of using diapers to prevent contact dermatitis and pressure ulcers in immobilized patients with urinary incontinence. An economic Markov model was developed and the costs of prevention versus treatment were calculated. 2) A clinical and economic evaluation of physiotherapy technologies that assessed organizational aspects and clinical efficacy. Overall, the document finds that non-drug medical technologies are less rigorously evaluated for efficiency and safety in Russia compared to drug technologies.
Tripartite dimension of interaction of patients, regulators and industry (Jan...jangeissler
This document discusses the importance of interaction and partnership between patients, regulators, and industry in medicine research and development. It acknowledges that patient involvement enhances the quality of research, evidence, transparency, and mutual respect. The document outlines some challenges to interaction, including siloed thinking and lack of trust, and notes that EUPATI has helped improve collaboration but long-term sustainability is key. The objectives of the event are to share experiences of pilot projects involving these stakeholders and ensure their interaction is understood and trusted.
This document discusses the importance of clinical trial registration. It states that the World Medical Association and the International Committee of Medical Journal Editors require registration of clinical trials in publicly accessible databases before patient recruitment begins. It describes the World Health Organization's International Clinical Trials Registry Platform as the primary registry, along with ClinicalTrials.gov, and lists other acceptable registries. The document also outlines the trial registration data set that registries should contain.
How to communicate scientific and medical information to patients, advocates ...jangeissler
How to communicate scientific and medical information to patients, advocates and caregivers, presented by Jan Geissler at the European Medical Writer's Symposium (EMWA) on 12 May 2016
Safety data reconciliation involves comparing safety data between a clinical database and safety database to ensure consistency. Key fields like adverse event term, action taken, causality, and outcome are reconciled. Discrepancies between the databases are identified and queries are issued to sites for resolution. The process aims to clean 100% of agreed upon safety data points and document any acceptable discrepancies.
David Selkirk has over 19 years of experience working for large and mid-size pharmaceutical companies and clinical research organizations. He will discuss the landscape of late phase clinical trials, including increasing regulations, the role of health technology assessments, and operational considerations. Key topics that will be covered include working with stakeholders, comparative effectiveness research, risk evaluation and mitigation strategies, patient reported outcomes, and contracting with vendors such as CROs. The future may see larger trials conducted with more independent oversight and accountability.
This document discusses research supported by the Innovative Medicines Initiative Joint Undertaking to develop methods for incorporating real-world clinical data into drug development strategies earlier in the process. The research is conducted by a partnership between universities, research organizations, companies, and other groups. The goal is to address demands from health technology assessment bodies and payers for evidence of a drug's effectiveness in real-world settings prior to approval, to better inform reimbursement and pricing decisions. Several work packages are developing methods like clinical trial simulations, pragmatic trial designs, using real-world data to supplement randomized controlled trial results, and evidence synthesis techniques.
This document discusses secondary data sources and databases used in healthcare. It provides examples of common secondary data sources like cancer registries, trauma registries, birth defects registries, diabetes registries, and immunization registries. For each type of registry, it describes the purpose, case definition, data collection elements, reporting and follow up processes, applicable standards and regulations. Common roles involved in managing secondary data sources and examples of internal and external users are also summarized.
This document discusses health information management functions in paper-based, electronic, and hybrid environments. It covers topics like master patient indexing, record storage and filing, release of information, and quality control. For paper records, it describes record processing, deficiency analysis, and forms design. Electronic records involve search, retrieval, and corrections in electronic document management systems. Hybrid records combine paper and electronic aspects.
The document discusses patient summaries in emergency departments. It describes how patient summaries can provide key medical information to help emergency department clinicians make timely treatment decisions. However, emergency clinicians currently face barriers to accessing complete and trusted patient summary data. Standards development aims to address issues of interoperability and data sharing so that patient summaries can better support clinical decision-making in emergency care situations.
What makes clinical trials in orphan indications so special?Sebastien Duval
Clinical trials in orphan indications have unique characteristics. Due to the rarity of these diseases, trials have small sample sizes, require many study sites, and proactive recruitment. They may justify placebos without concurrent treatment and open-label extensions. Motivated patients are willing to participate, but require proactive outreach. SynteractHCR has experience conducting over 90 rare disease trials in over 30 indications.
Similarities and differences between Rare Cancers and Rare Diseasesjangeissler
While rare cancers (RCs) and rare diseases (RDs) face many similar challenges due to their rarity, there are also some key differences:
- RDs impact a larger number of different conditions (around 6000) compared to RCs (198 known types), and RDs are defined by prevalence while RCs by incidence.
- A majority of both RCs and RDs are life-threatening, but RDs more often affect children compared to RCs.
- Both communities struggle with delays in diagnosis, limited research funding, and a need for specialized treatment centers and clinical guidelines. However, RCs can take more advantage of research on common cancers, while RDs are more heterogeneous.
The role of patients and healthcare providers in translational medicinejangeissler
The role of patients and healthcare providers in translational medicine, presented by Jan Geissler at the European Commission's Personalized Medicine Conference 2016 on 1 June 2016 in Brussels
The document outlines the World Health Organization's first edition of the Model List of Essential In Vitro Diagnostics (EDL). The EDL provides guidance to countries on selecting important diagnostic tests to address disease priorities based on their health systems and needs. The EDL lists general diagnostic tests and disease-specific tests for primary healthcare facilities and facilities with clinical laboratories. It is intended to complement the WHO Model List of Essential Medicines and help improve access to quality diagnostics globally. Selection of tests was based on disease burden, unmet needs, and priorities. The EDL provides information on test purpose, format, specimens, recommended facility level, and links to WHO guidance and prequalified products. Countries should consider local factors in adapting
Workshop 6 - Brainstorming & Policy Development session: Training, information and education of MDs
"Sharing expertise: transfer of experience from patient organizations to doctors and between patient
organisations"
Rainald von Gizycki, Retina Europe,
Germany
1. Generic PRO instrument
2. Disease specific
3. Population specific
4. Dimension specific
5. Individualized
6. Summary items
7. Utility measures
Full Information : https://bit.ly/2VmTrLs
Reference : https://pubrica.com/services/research-services/
Why pubrica?
When you order our services, we promise you the following – Plagiarism free, always on Time, outstanding customer support, written to Standard, Unlimited Revisions support and High-quality Subject Matter Experts.
Contact us :
Web: https://pubrica.com/
Blog: https://pubrica.com/academy/
Email: sales@pubrica.com
WhatsApp : +91 9884350006
United Kingdom: +44-74248 10299
Related Topics:
Literature gap and future research
Meta-Analysis in evidence-based research
Biostatistics in clinical research
Scientific Communication in healthcare
Tags:
Medical writing service | Scientific communication services | Scientific research services | Clinical trials | Publication services | Scientific Manuscript editing services
Presentation exploring the development of clinical trial registries and clinical trial results databases and their impact on the clinical study industry, including their challenges and the potential for creating new forms of liability.
Presentation carried out during the EMBC'16 conference in Orlando the 17th of August by Paulo Carvalho and Vicente Traver introducing the LINK project and the results of the first iteration with experts about the future opportunities and challenges for research on personalised health care for cardiovascular disease management.
Oral presentation ICC-PBM 2018 @ G-I-N conference Manchester (UK) 2018CEBaP_rkv
The document describes how an international consensus conference on patient blood management (ICC-PBM) integrated the GRADE approach and a formal consensus methodology. A scientific committee formulated 17 questions to guide 3 topics of interest. A 2-day conference included 200 medical experts from 10 disciplines who reviewed evidence using GRADE. It included open sessions for evidence presentation, discussion, and closed executive sessions where decision-making panels drafted recommendations. The process aimed to develop transparent, evidence-based consensus guidelines for optimizing patient blood management.
This document discusses clinical and economic analyses that were conducted on non-medical technologies in Russia. It summarizes two studies: 1) A study analyzing the cost-effectiveness of using diapers to prevent contact dermatitis and pressure ulcers in immobilized patients with urinary incontinence. An economic Markov model was developed and the costs of prevention versus treatment were calculated. 2) A clinical and economic evaluation of physiotherapy technologies that assessed organizational aspects and clinical efficacy. Overall, the document finds that non-drug medical technologies are less rigorously evaluated for efficiency and safety in Russia compared to drug technologies.
Tripartite dimension of interaction of patients, regulators and industry (Jan...jangeissler
This document discusses the importance of interaction and partnership between patients, regulators, and industry in medicine research and development. It acknowledges that patient involvement enhances the quality of research, evidence, transparency, and mutual respect. The document outlines some challenges to interaction, including siloed thinking and lack of trust, and notes that EUPATI has helped improve collaboration but long-term sustainability is key. The objectives of the event are to share experiences of pilot projects involving these stakeholders and ensure their interaction is understood and trusted.
This document discusses the importance of clinical trial registration. It states that the World Medical Association and the International Committee of Medical Journal Editors require registration of clinical trials in publicly accessible databases before patient recruitment begins. It describes the World Health Organization's International Clinical Trials Registry Platform as the primary registry, along with ClinicalTrials.gov, and lists other acceptable registries. The document also outlines the trial registration data set that registries should contain.
How to communicate scientific and medical information to patients, advocates ...jangeissler
How to communicate scientific and medical information to patients, advocates and caregivers, presented by Jan Geissler at the European Medical Writer's Symposium (EMWA) on 12 May 2016
Safety data reconciliation involves comparing safety data between a clinical database and safety database to ensure consistency. Key fields like adverse event term, action taken, causality, and outcome are reconciled. Discrepancies between the databases are identified and queries are issued to sites for resolution. The process aims to clean 100% of agreed upon safety data points and document any acceptable discrepancies.
David Selkirk has over 19 years of experience working for large and mid-size pharmaceutical companies and clinical research organizations. He will discuss the landscape of late phase clinical trials, including increasing regulations, the role of health technology assessments, and operational considerations. Key topics that will be covered include working with stakeholders, comparative effectiveness research, risk evaluation and mitigation strategies, patient reported outcomes, and contracting with vendors such as CROs. The future may see larger trials conducted with more independent oversight and accountability.
This document discusses research supported by the Innovative Medicines Initiative Joint Undertaking to develop methods for incorporating real-world clinical data into drug development strategies earlier in the process. The research is conducted by a partnership between universities, research organizations, companies, and other groups. The goal is to address demands from health technology assessment bodies and payers for evidence of a drug's effectiveness in real-world settings prior to approval, to better inform reimbursement and pricing decisions. Several work packages are developing methods like clinical trial simulations, pragmatic trial designs, using real-world data to supplement randomized controlled trial results, and evidence synthesis techniques.
This document discusses secondary data sources and databases used in healthcare. It provides examples of common secondary data sources like cancer registries, trauma registries, birth defects registries, diabetes registries, and immunization registries. For each type of registry, it describes the purpose, case definition, data collection elements, reporting and follow up processes, applicable standards and regulations. Common roles involved in managing secondary data sources and examples of internal and external users are also summarized.
This document discusses health information management functions in paper-based, electronic, and hybrid environments. It covers topics like master patient indexing, record storage and filing, release of information, and quality control. For paper records, it describes record processing, deficiency analysis, and forms design. Electronic records involve search, retrieval, and corrections in electronic document management systems. Hybrid records combine paper and electronic aspects.
The document discusses patient summaries in emergency departments. It describes how patient summaries can provide key medical information to help emergency department clinicians make timely treatment decisions. However, emergency clinicians currently face barriers to accessing complete and trusted patient summary data. Standards development aims to address issues of interoperability and data sharing so that patient summaries can better support clinical decision-making in emergency care situations.
The document discusses patient summaries in emergency departments and their potential to improve care. It describes how patient summaries can provide key medical information to clinicians in emergency situations. However, effective use of patient summaries faces challenges around standards, access to data across organizations, and clinician trust in external medical records. Overcoming these challenges could help unlock the power of health data to support clinical decision making in emergency care.
This document discusses developing a framework for evidence-based medicine using real-world data. It outlines developing a framework that captures baseline rates and evolves over time. The objective is to facilitate discussion on assembling baseline data from sources like clinical trials, patient data, and genomic studies to derive treatable patient traits and map available therapies to identify unmet medical needs. It provides examples of establishing such a framework for a condition like atopic dermatitis and lists potential components needed like an up-to-date health metrics database and tools for evaluating disease burden and treatment efficacy.
Trillium Bridge and beyond: state of play and future prospects chronaki
The document discusses the Trillium Bridge Project, which conducted a feasibility study on exchanging patient summaries between the US and EU by comparing and mapping different patient summary standards and conducting pilot testing of exchange between Kaiser Permanente and several EU countries. It provides recommendations to advance an international patient summary standard to allow citizens to share health information globally and recommendations to incentivize and support secure exchange of patient summaries.
eHealth Practice in Europe: where do we stand?chronaki
eHealth as the use of Information and communication technologies in the practice of health care comprises Electronic health records, Healthcare information exchange cross-jurisdictions, Personal health records, Telehealth, telemedicine and remote monitoring.
There are several efforts to reflect and measure the practice of eHealth including efforts by the OECD and WHO, but in general there is little reported sharing of health data particularly with patients. Specific barriers frequently mentioned are supporting policies and coherent widely implemented standards.
The presentation discusses relevant efforts and programs supported by the European Commission such as the eHealth DSI, eStandards, ASSESS CT, and openMedicine aiming at large scale eHealth adoption It calls for engagement of European Society, its national societies, and its members.
This document summarizes the key points in developing global registries for rare diseases. It discusses the definition of rare diseases and registries, and compares registries to randomized controlled trials. Registries can collect real-world data on large populations over long periods of time. The document outlines challenges in rare disease research and treatment that registries can help address. It provides examples of national and European registry initiatives and discusses harmonizing data collection across borders. The need for public health and research-focused registries is described. Finally, a successful European registry for intoxication-type metabolic diseases is presented as a case study.
This document provides an overview of the clinical process, record keeping, and use of clinical data. It describes the typical stages of a clinical encounter including history, examination, investigations, and management. Clinicians use different data sources like patient interviews and medical records to make care decisions. The challenges of managing clinical data are discussed. Patient pathways are supported by structured clinical data that is recorded in sources like the electronic patient record. Standards help ensure clinical records contain the right information in the proper structure and format.
The eumusc.net project was a panEuropean project on musculoskeletal (MSK) health. It developed an atlas of MSK health and tools to vigil it, standards of care for rheumatoid arthritis (RA) and osteoarthritis, quality indicators for RA, and tips for implementing all them.
El proyecto eumusc.net fue un proyecto paneuropeo sobre salud musculoesquelética (ME). Se desarrolló un atlas de y herramientas de vigilancia de la salud ME, estándares de cuidado para la artritis reumatoide (AR) y la artrosis, indicadores de calidad para la AR, y consejos para la implementación de todos ellos.
Early diagnosis and prevention enabled by big data geneva conference finale-Marefa
The presentation provides an overview of how digital health or use of data processing and telecommunication infrastructure can contribute to the early diagnosis and prevention of diseases.
This document outlines a lecture on eHealth. It discusses how eHealth can support healthcare through electronic medical records, clinical decision support systems, telemedicine, and standards. Examples are provided of how telemedicine is used in minor injury units in Cornwall and by NHS Direct. eHealth/eScience is described as supporting cancer diagnosis and treatment through technologies like teleconferencing, imaging delivery, data mining of patient records, and access to medical simulations. Overall the document provides an overview of existing and future applications of eHealth.
REG PCORI Grant Planning Meeting 26/09/15Zoe Mitchell
The document outlines an agenda for a planning meeting between the Respiratory Effectiveness Group (REG) and the Patient-Centered Outcomes Research Institute (PCORI) to discuss potential comparative effectiveness research collaborations. Key items on the agenda include aligning the missions of REG and PCORI, discussing what comparative effectiveness research entails, engaging stakeholders, and generating ideas for potential research topics that could be funded through PCORI. The meeting aims to identify topics of interest to both organizations that incorporate patient-centered outcomes research.
This document discusses prevention and health promotion in healthcare across Europe. It defines what good prevention and health promotion looks like, including health education programs, adult and child immunization policies, disease screening programs, infection prevention policies, and improving secondary prevention through risk factor reduction. The document emphasizes that while policymakers acknowledge the need to shift focus to prevention, progress has been variable. It argues that prevention is a cost-effective investment that can improve health and reduce disease burden and health inequalities.
This document discusses using ontologies to simplify semantic solutions for biomedical applications. It provides examples of how ontologies can be used to integrate medical expertise and knowledge from different sources. It also describes challenges in representing biomedical information with ontologies and introduces MedMaP, a medical management portal that aims to simplify access to ontology-based reasoning and analytics using graphical visualizations and self-service tools. MedMaP allows users to customize their experience and gain insights from subject matter experts.
Health Information Standards - Kevin O'Carrollhealthcareisi
The document discusses several projects of the Health Information Directorate at the Health Information and Quality Authority (HIQA) in Ireland, including:
1. The General Practice Messaging Specification (GPMS), which defines a standard for electronic messaging between general practitioners and other healthcare providers.
2. The National Dataset for General Practice Referrals, which defines a standard format for electronic referrals from GPs to hospitals and other care providers.
3. Standards for coding laboratory tests and results, including adopting the Logical Observation Identifiers Names and Codes (LOINC) system for test coding.
Health research, clinical registries, electronic health records – how do they...Koray Atalag
This is a talk I gave at my own organisation - National Institute for Health Innovation (NIHI) of the University of Auckland on 6 Aug 2014. Abstract as follows:
In this talk I’ll first cover the topic of clinical registry – an invaluable tool for supporting clinical practice but also gaining momentum in research and quality improvement. NIHI has been very active in this space: we have delivered the prestigious and highly successful National Cardiac Registry (ANZACS-QI) together with VIEW research team and also very recently launched the Gestational Diabetes Registry with Counties Manukau DHB & Diabetes Projects Trust. A few others are in likely to come down the line. This is a huge opportunity for health data driven research and NIHI to position itself as ‘the health data steward’ in the country given our independent status and existing IT infrastructure and “good culture” of working with health data . NIHI’s ‘health informatics’ twist in delivering these projects is how we go about defining ‘information’ – using a scientifically credible and robust methodology: openEHR. This is an international (and now national too) standard to non-ambiguously define health information so that they are easy to understand and also are computable. We build software (even automatically in some cases!) using models created by this formalism. I’ll give basics of openEHR approach and then walk you through how to make sense out of all these. Hopefully you may have an idea about its ‘value proposition’ (as business people call) or Science merit as I like to call it ;)
The document discusses challenges around access to medical devices from patients' perspectives across Europe. It notes a lack of transparency in pricing and reimbursement processes and criteria for medical devices. In Hungary specifically, prior to 2010 the reimbursement system for medical devices was non-transparent without clear criteria or patient involvement. A new regulation in 2010 introduced a point-based system for reimbursement decisions, but there is still no experience with how well it will work.
Presentation by Chad Kimbler and Carla Tressell. Presented at the 2018 Eyes on a Cure: Patient & Caregiver Symposium, hosted by the Melanoma Research Foundation's CURE OM initiative.
This document discusses patient summaries in emergency departments. It describes the high cognitive demands placed on emergency department staff and high diagnostic error rates. International and European guidelines for patient summaries are outlined, defining them as a minimum set of clinical data for healthcare coordination. The document argues that patient summaries could help navigate health systems and unlock health data, but challenges include data sharing between different health record systems and ensuring privacy and trust.
This document discusses digital health policies for children's immunization in Greece. It provides an overview of Greece's national immunization program, including that most children are vaccinated by private pediatricians through free vaccines provided via e-prescription. Vaccination records are primarily kept by parents, though some healthcare workers keep records in their offices. Vaccination coverage is generally satisfactory according to national studies, though some vaccines like MMR II and rotavirus have lower coverage. An immunization registry has not yet been implemented in Greece due to lack of legislation and challenges connecting existing electronic healthcare data.
The document discusses health data and patient summaries for children with complex care needs. It notes that these children have multidimensional health and social care needs due to medical conditions. The document then provides statistics on children who require long-term ventilation, have intractable epilepsy, or have traumatic brain injuries and their caregivers' ability to identify all of their healthcare providers. It also shows consultation rates for care plans for adolescents with traumatic brain injuries. The document outlines key data issues and discusses autonomy issues in child primary care, including a child's ability to access their health record or restrict parental access. It also examines consent issues for HPV vaccination between parents and children in different countries. Finally, it discusses concepts of vulnerability and capacity to engage from
The document discusses findings from a stakeholder meeting on issues with access, education, data quality, and communication. It presented findings to stakeholders and identified additional factors. The findings will be reviewed in the context of relevant literature.
This document discusses the development of an International Patient Summary (IPS) specification to enable sharing of patient health information across borders for unscheduled care. It outlines the vision, scope, and principles for the IPS, which aims to provide a standardized yet minimal collection of clinically relevant information. The document also describes collaboration between the HL7 and CEN standards organizations to produce four IPS specifications, and plans to refine and extend the IPS to support additional use cases beyond emergency care.
The document summarizes the objectives and activities of the EU-Joint Action on Vaccination (EU-JAV) work package 5 (WP5), which aims to strengthen interaction between immunization information systems (IIS) in Europe. WP5 will assess IIS interoperability, test estimating measles-mumps-rubella vaccine coverage across Europe using IIS data, and evaluate vaccine reminder systems. The goals are to increase vaccine surveillance capabilities, coverage, and support research using combined European vaccine data. WP5 involves 20 EU countries and is led by Denmark and Croatia over 3 years with a €5.8 million budget.
This document proposes a Council Recommendation on strengthened cooperation against vaccine-preventable diseases. It notes that vaccination programs are the responsibility of Member States but could benefit from more coordinated EU action given the cross-border nature of diseases. It recommends actions like improving public dialogue on vaccines, ensuring adequate training for healthcare workers, reducing barriers to vaccination when moving between countries, and strengthening vaccine supply and research. The recommendation is based on existing EU policies and calls to address vaccine-preventable diseases jointly.
The document discusses the benefits of exercise for mental health. Regular physical activity can help reduce anxiety and depression and improve mood and cognitive function. Exercise causes chemical changes in the brain that may help protect against mental illness and improve symptoms.
The document summarizes responses to a survey about vaccination priorities and challenges in the EU. 13 individuals responded to questions about ranking vaccination priorities for children and considering adults, with the highest rankings going to European vaccination guidelines and information websites. 12 respondents also ranked implementation feasibility of the priorities, again ranking guidelines and information websites as most feasible. 6 respondents identified the biggest cross-border health threat as lack of standardized procedures, data collection and vaccination schedules within and between countries.
The document discusses how GS1 standards will require barcodes on vaccines to uniquely identify individual packages under the EU Falsified Medicines Directive. Barcodes will need to be added to vaccines by February 9th, 2019, and scanning the barcodes will allow verification of the correct vaccine, batch traceability, expiration checks, and authentication of the vaccine to improve patient safety.
The European Academy of Paediatrics Research in Ambulatory Settings network (EAPRASnet) was launched in 2008 to conduct research using primary care data from European countries. The network involves primary care pediatricians who collect patient data through surveys and electronic health records. EAPRASnet aims to study topics like quality of care, child health inequalities, vaccination attitudes and antibiotic use across Europe. It has published several studies on issues like managing urinary tract infections, pneumonia treatment preferences, and use of electronic health records. Current projects examine health issues for migrant children and oral health practices among European pediatricians.
The European Academy of Paediatrics (EAP) is the official political voice for children and paediatricians throughout Europe. As the paediatric section of the UEMS European Union Medical Specialists, the EAP represents over 32 European countries and advocates for children's rights and quality paediatric care. The EAP works to improve paediatric education, training, research, and care across Europe through various councils and committees focused on primary, secondary, and tertiary care as well as rare diseases, vaccination, and other issues.
The European Academy of Paediatrics (EAP) is the pediatric section of the UEMS that represents pediatric societies and organizations from over 40 European countries. EAP promotes the health and well-being of children by improving pediatric standards, developing best practices, and harmonizing pediatric training programs across Europe. Some of EAP's focus areas include vaccination, migrant health, antimicrobial resistance, chronic diseases, and training for young pediatricians.
This document summarizes a workshop on patient summaries in pediatric emergencies. The workshop aims to identify challenges and recommendations for digital health policies related to standards. Several speakers will present on topics including disparities in national policies on emergency clinical information availability for school children based on a MOCHA project survey. The Trillium-II project extending patient summaries beyond cross-border settings will also be discussed. Case studies on complex pediatric patients and mobile apps to assist families during emergencies will likewise be presented. The expected outcome is a workshop report to guide follow-up child health activities.
The document provides information about an upcoming international patient summary workshop. It discusses the history and mission of HL7, an organization that develops standards for health information technology, including growing exponentially since 1987. It also outlines HL7's use and development of CDA (Clinical Document Architecture) standards in various countries, including Finland, Germany, and Austria. The document shares examples of how CDA has been implemented for different use cases like ePrescriptions, electronic health records, and discharge summaries.
The document discusses the Trillium-II initiative to scale up use of patient summaries in Europe and globally. It aims to progress the International Patient Summary Standard and leverage existing work on patient summaries and interoperability assets from previous projects like Trillium Bridge. The initiative will focus on unlocking patient data through patient summaries, developing educational materials, and involving stakeholders to identify needs and enablers for successful implementation. The overall goal is to empower individuals and enhance health systems through use of interoperable patient summaries.
Digital Enlightment Forum: Towards a European ecosystem for health care data
Presentation of eStandards/Trillium II at the workshop of the Digital Enlightment Forum
The document discusses the Trillium Bridge II project, which aims to reinforce and scale up EU-US cooperation on patient summaries. It will do this by (1) developing and testing interoperability assets for patient summary components, (2) extending the scope of patient summaries beyond emergency care to include new use cases, and (3) creating an EU-US interoperability roadmap and governance for international patient summary standards. The project brings together stakeholders from standards development organizations, health systems, and industry to support global digital health innovation through cooperation on patient summaries.
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Basics of Electrocardiogram
CONTENTS
●Conduction System of the Heart
●What is ECG or EKG?
●ECG Leads
●Normal waves of ECG.
●Dimensions of ECG.
● Abnormalities of ECG
CONDUCTION SYSTEM OF THE HEART
ECG:
●ECG is a graphic record of the electrical activity of the heart.
●Electrical activity precedes the mechanical activity of the heart.
●Electrical activity has two phases:
Depolarization- contraction of muscle
Repolarization- relaxation of muscle
ECG Leads:
●6 Chest leads
●6 Limb leads
1. Bipolar Limb Leads:
Lead 1- Between right arm(-ve) and left arm(+ve)
Lead 2- Between right arm(-ve) and left leg(+ve)
Lead 3- Between left arm(-ve)
and left leg(+ve)
2. Augmented unipolar Limb Leads:
AvR- Right arm
AvL- Left arm
AvF- Left leg
3.Chest Leads:
V1 : Over 4th intercostal
space near right sternal margin
V2: Over 4th intercostal space near left sternal margin
V3:In between V2 and V4
V4:Over left 5th intercostal space on the mid
clavicular line
V5:Over left 5th intercostal space on the anterior
axillary line
V6:Over left 5th intercostal space on the mid
axillary line.
Normal ECG:
Waves of ECG:
P Wave
•P Wave is a positive wave and the first wave in ECG.
•It is also called as atrial complex.
Cause: Atrial depolarisation
Duration: 0.1 sec
QRS Complex:
•QRS’ complex is also called the initial ventricular complex.
•‘Q’ wave is a small negative wave. It is continued as the tall ‘R’ wave, which is a positive wave.
‘R’ wave is followed by a small negative wave, the ‘S’ wave.
Cause:Ventricular depolarization and atrial repolarization
Duration: 0.08- 0.10 sec
T Wave:
•‘T’ wave is the final ventricular complex and is a positive wave.
Cause:Ventricular repolarization Duration: 0.2 sec
Intervals and Segments of ECG:
P-R Interval:
•‘P-R’ interval is the interval
between the onset of ‘P’wave and onset of ‘Q’ wave.
•‘P-R’ interval cause atrial depolarization and conduction of impulses through AV node.
Duration:0.18 (0.12 to 0.2) sec
Q-T Interval:
•‘Q-T’ interval is the interval between the onset of ‘Q’
wave and the end of ‘T’ wave.
•‘Q-T’ interval indicates the ventricular depolarization
and ventricular repolarization,
i.e. it signifies the
electrical activity in ventricles.
Duration:0.4-0.42sec
S-T Segment:
•‘S-T’ segment is the time interval between the end of ‘S’ wave and the onset of ‘T’ wave.
Duration: 0.08 sec
R-R Interval:
•‘R-R’ interval is the time interval between two consecutive ‘R’ waves.
•It signifies the duration of one cardiac cycle.
Duration: 0.8 sec
Dimension of ECG:
How to find heart rhytm of the heart?
Regular rhytm:
Irregular rhytm:
More than or less than 4
How to find heart rate using ECG?
If heart Rhytm is Regular :
Heart rate =
300/No.of large b/w 2 QRS complex
= 300/4
=75 beats/mins
How to find heart rate using ECG?
If heart Rhytm is irregular:
Heart rate = 10×No.of QRS complex in 6 sec 5large box = 1sec
5×6=30
10×7 = 70 Beats/min
Abnormalities of ECG:
Cardiac Arrythmias:
1.Tachycardia
Heart Rate more than 100 beats/min
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Medinfo2017 Trillium II Workshop
1. Reinforcing the Bridges and Scaling up
EU/US Cooperation on Patient
Summary
Trillium II
This project has received funding from the
European Union’s Horizon 2020 research
and innovation programme under grant
agreement No 727745
5. right and enabler of safe
care.
stakeholder groups to identify
needs
key enablers and success
educational and training material
6.
7. • Quality assurance
• Health goals
• Early warnings
Can we use patient summaries to unlock patient data?
8.
9. Reinforcing the Bridges and Scaling up
EU/US Cooperation on Patient
Summary
Trillium II
This project has received funding from the
European Union’s Horizon 2020 research
and innovation programme under grant
agreement No 727745
10. 10
HL7 Foundation: who we are..
HL7 the best and most widely-
used
eHealth standards since 1986
HL7 v2
Clinical Document Architecture
CIMI
HL7 FHIR
19 National Affiliates in Europe (~38
wordwide)
European HL7 foundation established
in 2010
European Funded Research
Projects
Annual HL7 in Europe Newsletter
Website: www.HL7.eu
eHealth policy & Research
SDO Joint Initiative Council
HL7 Vision: A world in which everyone can securely access & use the right health data when & where they need it.
August 24, 2017
Hangzhou, China
Building a global community for digital health innovation: the role of patient summaries
11. The Use Case: what if you need care abroad?
• When patient needs unplanned care in another country, a
EHR summary fit for the purpose of safe and efficient
health care is available.
• After the health care encounter, patient receives encounter
report in a format and language that can be understood
back home.
• Addressed by European Union funded projects in cases of
unplanned or emergency care
- among European member states by epSOS (2008-2011) and eHDSI
(2017-2020)
- In the transatlantic setting by the Trillium Bridge project
(www.trilliumbridge.eu)
- Globally by the International patient summary implementation
guide.
12. European Patient Summary
Guidelines, Nov 2013, rev 2016
Country of origin
Country of
treatment
Clinical Records in the
Country of treatment
Contact Point for Patient
Summaries In Country of
Treatment
Translated/
Transcoded
EU Patient
Summary
Terminology
Services
Clinical Records in
the country of Origin
EU Patient
Summary
Contact Point for
Patient Summaries In
Country of Origin
Patient seeks unplanned care
where another language is
spoken.
13. EU Patient Summary Guideline
EU patient summary guideline defines patient summary as the
“minimum set of information needed to assure healthcare coordination and continuity of
care”
• Emergency or unplanned care refers to
“the range of healthcare services available to people who need medical advice, diagnosis
and/or treatment quickly and unexpectedly”
• Types of EHR summaries
• Emergency data set
• Continuity of care record
• Encounter report
• Discharge summary
• 2nd opinion
• Clinical patient summary
• Disease specific summaries
• Around the world many variants of the same basic types of patient summaries
• HL7 Consolidated CDA
• seven document types, seven of which were consolidated in CCDA
14.
15. Results of Trillium Bridge 2013-2015
• Gap Analysis
• Compared patient summary specifications in EU/US
• Shared clinical elements: problems, medications, allergies
• Interoperability Assets
• Established a terminology prototype CTS-2 service: http://extension.phast.fr/STS_UI
• Developed Patient summaries Transformer: http://informatics.mayo.edu/trillium-
bridge
• Identified Gaps in IHE profiles Patient Identity & Document Query/Retrieve
• Validation activities: 4 EU countries/ Kaiser Permanente
• EU/US Marketplace; HIMSS 2015; IHE Connectathon 2015, eHealthWeek
Recommendation: “Advance an International Patient Summary (IPS) standard
to enable people to access and share their health information for emergency or
unplanned care anywhere and as needed. At minimum the IPS should include
immunizations, allergies, medications, clinical problems, past operations and
implants.”
16. Comparison of EHR summaries
and the International Patient Summary bottom line
Allergies
Medications
Problems
Pregnancy History
Expected date of delivery
Vaccinations
Social History
Medical Devices
Vital Signs
Blood group
ProceduresAllergies
Problems
Immunizations
Procedures
(surgical )
Functional Status
(autonomy / invalidity)
Results
(blood group )
Social History Observations
(lifestyle history )
Vital signs
(blood pressure )
Medications
Pregnancy history
(expected date of delivery )
Advance Directives
Encounters
Family History
Payers
CCDPS
Plan of Care
(therapeutic recommendations )Medical Devices and Implants
• Same base Standard (HL7 CDA)
• Different philosophy: capture vs continuity of care
• Different IGs: C-CDA/CCD (US realm) vs epSOS IG
• Different technical approach: Open vs Closed Template
17. Transforme
r
(CTS2)
Trillium Bridge Provider-Mediated Exchange
Examples of most significant issues with specification alignment
• Certificates: Self signed for purposes of demonstration
• SAML: Differences in the requirements for eHealth versus epSOS implementation
• Patient Discovery: Demographics versus identifier based search
• Document Query: Difference in Class Code for Document Type used
• Document Retrieve: Country specific identifier is used to retrieve for epSOS
IHE
XCPD
IHE XCA
IHE
ATNA
(epSOS)
IHE
XCPD
IHE XCA
IHE
ATNA
(eHealth)
Trillium Bridge
Gateway
(epSOS Open NCP)
National
Contact
Point
18. The main question for Trillium Bridge..
• Can we convert a patient summary generated in the European Union
according to the EU Patient Summary Guideline to one useful in the USA?
• Our Action: Compared clinically, syntactically and semantically the
European PS (epSOS) and MU clinical summary (HL7 CCDA/CCD)
• Evidence: use specs & examples, carry out tests
• Two use cases:
- Provider mediated (citizen controlled, provider initiated)
- Patient mediated (citizen initiated, citizen controlled)
• Blazing the transatlantic path – constraints and assumptions
- Translation of narrative unstructured content (not in scope)
- Incorporate patient summary elements in EHR or PHR (not in scope)
- EU Citizens have access to their EU Patient Summary (e.g. epSOS)
- US Citizens have access to their Clinical Summary in C-CDA/ CCD
• Feasibility study: what have we learned and what are the implications?
19. Comparison of EHR summaries
and the International Patient Summary bottom line
Allergies
Medications
Problems
Pregnancy History
Expected date of delivery
Vaccinations
Social History
Medical Devices
Vital Signs
Blood group
ProceduresAllergies
Problems
Immunizations
Procedures
(surgical )
Functional Status
(autonomy / invalidity)
Results
(blood group )
Social History Observations
(lifestyle history )
Vital signs
(blood pressure )
Medications
Pregnancy history
(expected date of delivery )
Advance Directives
Encounters
Family History
Payers
CCDPS
Plan of Care
(therapeutic recommendations )Medical Devices and Implants
• Same base Standard (HL7 CDA)
• Different philosophy: capture vs continuity of care
• Different IGs: C-CDA/CCD (US realm) vs epSOS IG
• Different technical approach: Open vs Closed Template
20. Section Comparison
epSOS/EU Directive
EU Patient
Guidelines epSOS PS CCD
Section Optionality Optionality Optionality Optionality
Allergy R R Allergies R
List of current medicines R R Medications R
List of current problems /
diagnoses R R Problem R
Surgical Procedures prior to
the past six months R O Procedures
O (R only for
inpatients)
Major Surgical Procedures in
the past six months R R Procedures
O (R only for
inpatients)
Medical Devices and
implants R R Medical Equipment O
Vaccinations O O Immunizations O
List of resolved, closed or
inactive problems O O Problem R
Social History Observations O O Social History O
Pregnancy history (Expected
date of delivery) O O Social History (Pregnancy Observation) O
Physical findings (Vital
Signs Observations) O O Vital Signs O
Diagnostic tests (Blood
group) O O Results Section R
Treatment Recommendations R O Plan of Care O
Autonomy / Invalidity R O Functional Status O
Advance Directives O
Family History O
Payer O
Encounters O
Text only
4 sections not present in
epSOS PSepSOS: 14 sections, 1 grouped = 13 sections
CCD: 15 sections, 4 not mapped = 11 sections
Can be grouped
together, only
difference is the date
21. Statistics: coverage of value sets
epSOS Value Set epSOS Code
System
concepts with
corresponence/
concepts present/
(% covered)
CCD Value Set CCD Code
System
concepts with
corresponence/
concepts present/
(% covered)
epSOSActiveIngredient ATC 606/5592 (6%) Medication Drug
Class
NDF-RT 1365/10699 (13%)
epSOSActiveIngredient ATC 2836/5592 (51%) Medication Brand
Name
RxNorm 3329/13885 (24%)
epSOSActiveIngredient ATC 2836/5592 (51%) Medication Clinical
Drug
RxNorm 9642/31214 (31%)
epSOSAllergenNoDrugs SNOMED CT 79/112 (71%) Ingredient Name UNII 5315/63996 (8%)*
epSOSRoutesofAdminis
tration
EDQM
Standard
Terms
55/73 (75%) Medication Route
FDA
NCI Thesaurus 57/118 (48%)
epSOSDoseForm EDQM
Standard
Terms
28/457 (6%) Medication Product
Form
NCI Thesaurus 99/153 (65%)
epSOSIllnessesandDisor
ders
ICD-10 1775/9525 (19%)
IHTSDO maps
Problem SNOMED CT 7204/16443 (44%)
IHTSDO maps
epSOSIllnessesandDisor
ders
ICD-10 1147/9525 (12%)
NLM maps
Problem SNOMED CT 6914/16443 (42%)
NLM maps
epSOSVaccine SNOMED CT 27/31 (87%) Vaccine
Administered
CVX 87/163 (53%)
38. Reinforcing the Bridges and Scaling up
EU/US Cooperation on Patient
Summary
Trillium IIThis project has received funding from the
European Union’s Horizon 2020 research
and innovation programme under grant
agreement No 727745
39. Scaling-up the use of patient
summaries
Emergency
• Emergency response teams
August 24 2017, Hangzhou, China
Building a global community for digital health innovation: the
role of patient summaries
Trillium-II’s ambition touches individuals through their mobile hub and the
community through an aggregating dashboard making the most of our data-driven
economy.
46. The Situation in Denmark
Jan Petersen, Chief Consultant
MedCom, Denmark
Building a global community for digital health
innovation: the role of patient summaries
47. 5,7 million citizens
Centrally-managed health care system
Health care is provided directly by the public sector, primarily paid
trough taxes and free of charge
5 Regions + 98 Municipalities
54 Public hospitals (+ 19 Private)
Approx. 2000 GP clinics
Approx. 1200 Specialists
407 Pharmacies
60 IT vendors – 100 IT systems
Danish Healthcare Sector - a few facts
48. Prerequisites for eHealth and standardization in
Denmark
• Unique Person ID - life-long and multi-purpose since 1968
• National registration of hospital contacts since1976
• Legal authorization registry for health care professionals
• Health provider/organization registry since 2006
• National security services
• National health service – tax financed
• National it-strategies
• National classifications and terminology
• - and a multi-vendor policy within eHealth
• Combination unique to Denmark
49. eHealth strategies
• Multi-vendor policy
• Standardised interfaces
• Messaging and central services
• Consensus building
• Regulation through (financial) agreements
50. The Danish Health Data Network
Exchange of data:
• Messaging
– One-to-one
– One data provider - One data
consumer
• Web service
– One-to-many
– One data provider – Many data
consumers
• Index lookup
– Many data provider – Many data
consumers
51. • A persistent document composed by a medical doctor
• An on-demand document compiled on-the-fly extracting
information from relevant sources
• A window – giving access to health information relevant to the
current clinical workflow/clinical task
• Sundhed.dk is such a clinical window
Patient summary – different concepts
The Human Condition
René Magritte (1933)
52. • The official portal for the public Danish Healthcare
Services
• Enables citizens and healthcare professionals to find
information and communicate
• Facilitates patient-centered digital services
• Provide access to and information about the Danish
healthcare services.
Sundhed.dk (sundhed ~ health)
53. • Providing general health related information to citizens and health care
professionals
• Granting privileged access to person related health information for citizens
and health care professionals
• A window for looking into person related health information residing in
national and local data repositories
• Sundhed.dk is displaying information not storing information
• Most information is read-only; with a few exceptions, e.g vaccinations, organ
donation
Sundhed.dk principles
54. 54
Available Services:
• Appointments
• X-ray reports
• EHR extracts (hospital)
• Lab reports
• Your GP
• Hospital encounters
• Referrals
• GP, Dentist, Specialist contacts
• Current medication
• Vaccinations
• Power of attorney
• Organ donation
• Living will
• Scanning program participation
• Denial to share information
• Access to log data
The National Danish Health Portal
https://www.sundhed.dk/borger/service/om-sundheddk/ehealth-in-denmark/
55. 55
• If an IPS (International Patient Summary) is a useful tool in planning and
delivering healthcare, then (yes/no questions)
– IPS available through an mobile app.
– IPS should be accessible in a national health portal
– IPS should be controlled by the patient or his relative only
– IPS should be accessible by relevant health care professionals
– IPS should only reflect the last 2 years history
Question to the audience
57. Sharing Data in the US Between
Different EHRs
~40% of systems are sharing data
~30% of physicians can find the data
~20% of the time data is integrated into the physician
workflow
~10% of the time the data has an impact on patient
care
Challenges of sharing summary documents
57
58. Data Exchange vs Services
Data exchange
Standard HL7 messages
Data is copied from one EHR/system to another
Many copies of the same data – oncology, wound care, pharmacy
Difficult to keep multiple copies synchronized
“Two copies of anything will eventually kill you.” – Al Pryor, PhD
One example of data duplication (Intermountain)
49 copies of patient registration data
294 million patient records online
288 million or 97% are duplicate copies
125,000 registration updates/day or 6.1 million total data
updates daily
58
59. Data Exchange vs Services
Standards based services
Data is accessed via standard Application
Programming Interfaces (APIs)
The data is accessed in “real time”, on demand
The data does not get stored in the new system
Current best example: HL7 Fast Healthcare
Interoperability Resources (FHIR – pronounced like
Fire)
59
60. Healthcare Services Platform Consortium
Mission
Improve health by creating a vibrant, open ecosystem of
interoperable applications, content, and services
Vision
Be a provider-led organization accelerating the delivery of
a platform that supports innovative healthcare
applications for the improvement of health and healthcare.
60
62. Implications for Patient Summaries
The same program could be used to create the patient
summary from different EHRs
A program could access multiple EHRs using the same
API to create the patient summary
The clinician could review “always” important data
Problem list, allergies, current medications
Followed by focused queries related to the patient
Last 5 HgbA1c, weights in the last year, BPs in last 3
months
62
64. Apps that enable data sharing…
Next-gen Interoperability
Disease and quality registries
Population Health integration
HIE integration
Data capture for research
Clinical Trial recruiting
EHR
2
Patient
Summary
EHR
3
EHR
1
Public
Health
64
65. Progress
FHIR is easy to implement
FHIR has unprecedented support from EHR vendors
SMART on FHIR really works!
Applications at Intermountain Healthcare
In use - Pediatric growth chart, Pediatric drug card, BP
Centiles
In development – HIE viewer, Pulmonary Embolus diagnosis
and management
University of Utah collaborations
ONC Challenge grant: Neonatal bilirubin app
ONC High Impact grant: Surgery transition app
65
66. What is the Clinical Information
Interoperability Council?
We want to create ubiquitous sharing of standardized data across the
breadth of medicine for:
Direct patient care
Research and learning
Public health
Clinical trials
International patient summaries
Data from devices
Post market surveillance
Quality and disease specific registries
Billing and health administration
Any where that we share health related data and information …..
67. HL7 CDA
CDISC
HL7 FHIR
data 138
mmHg
SystolicBPSystolicBPObs
quals
data Right
Arm
BodyLocatio
n
BodyLocation
data Sittin
g
PatientPositi
on
PatientPosition SNOMED CT
LOINC or
SNOMED Observable
Repository of
Shared Models
in an approved
Formalism
Model Review
SNOMED CT
LOINC
RxNorm
Core Reference Model
Standards Infusion
CEMs
Initial Loading of Repository
DCMs
CDEs
CDA
Templates
openEHR
Archetypes
ISO EN 13606
Archetypes
FHIM
Models
FHIR
Resources
Logical Model Development Lifecycle
CDISC
SHARE
Model Dissemination
Translators
HL7 V2
NCPDP
X12
70. Core Assumptions
‘The complexity of modern medicine exceeds the inherent
limitations of the unaided human mind.’
~ David M. Eddy, MD, Ph.D.
‘... man is not perfectible. There are limits to man’s
capabilities as an information processor that assure
the occurrence of random errors in his activities.’
~ Clement J. McDonald, MD
70
72. Why?
We need to
Provide better care
By sharing executable clinical decision support modules
Decrease cost
Make clinicians and patients happier
Provide accurate computable data as the foundation of a
learning health system
73. The July 13th meeting in
Bethesda
Keynote speaker – Don Rucker, MD (National Coordinator for HIT)
About 120 attendees
Representing – AAN, AAO, ACOG, ACS, ACC, ACP, APTA, ANA, FDA, CDC, NCI,
AHRQ, NIAID, DoD, VA, PCPI, AMIA, SPM, HIMSS and many other organizations
Meeting outcomes
CIIC should continue
Create mission, vision, a plan for initial governance
Develop a mailing list and a discussion forum
Projects
ACOG – OPA – FPAR, Cancer DTR, MDEpiNet RAPID, Wound Assessment, PCPI registry
interoperability project, Quality measures
Next meeting – December 5-7 in New Orleans with HL7 Partners in Interoperability
75. 17/02/2018
Building a Global Community for Digital Health Innovation:
the Role of Patient Summaries
24.08.2017
Henrique Martins | President of the Board of SPMS
77. International Patient Summary
Strategic Intent
Citizens have scattered data, in multiple locations
Citizens have data in multiple systems
Citizens receive care in multiple places
Citizens receive care in multiple contexts
Citizens own their data
Citizens want to control their data…
Citizens wnat to write their health data
Citizens take pills (imagine… by them selves…)
GREAT!!
Ego….
The citizen will gather, collect,
analyse and validade, identify
and question his/her health
data, will “move” part of the
data with in, to him, to
others, to the governement
for secundary use. The citizen
will move his/her data to the
care setting…
Information nomadicity ERA
83. ENESIS2020–NationalStrategyforHealthInformationEcosystem2020
Strategic Principles and Objectives:
…principle of transparency and open data, proactive management of the value of
health data, and promotion of a new knowledge-based knowledge economy;
…principle of centrality in the citizen;
…principle of data portability (...) adoption of the Mobile Health / mHealth
concept;
Promotion of interoperability (...)
Adoption of a comprehensive governance model (...) Council of Ministers Resolution n.º 62/2016
84. Videocall
On Web: site
and email
On APP and
Phone
NO Paper!
ENESIS2020–NationalStrategyforHealthInformationEcosystem2020
90. MySNSWallet
Portability – the Patient Summary and additional relevant
Health information directly in the Citizen’s possession.
Tailoring – the Citizen can choose what information is
relevant for him, download only those cards, delete them or
add new ones when he wants.
Your Patient Summary in your pocket!
91. MySNS Wallet: new cards with new information
• Allergies;
• Vaccines;
• Procedures;
• Diagnostics;
• Medical Devices;
• Medication;
• Rare Diseases;
• Living Will;
• Emergency card;
• Blood Donor;
• Oral Health;
• …
92. MySNS WaitTimes
Real time information on waiting time for emergency
rooms
Citizens’ “own” information
Information anywhere
98. Card by Card… we are making Portguese Health better!
Individual
Vaccines Card
4 298 408
Total
treated
individual
s
2 542 202
Patient
with
Vaccine
registratio
n
Number of patients existing in the
original and treated database.
It includes all users who have at least
one contact with the migrated CS
(enrolled, non-registered and
sporadic), and the same user will count
as many times as the different CSs
where they have passed.
1 985
694
Patient
with
Active
enrollme
nt
Number of migrated patients
with active enrollment in
HealthCare already migrated
Number of patients migrated
with contact with CS already
migrated and with registration
of vaccines.
44 641 Centrally registered vaccines
(since april 2016)
Good morning ladies and gentlemen.
We have a problem with health data. My premise is that patient summaries can serve as the entry point to health information.
My talk today will be on Trillium II – an initiative that aims to create a community of innovation for the practice of digital health starting from the notion of patient summaries.
And my premise here for you to think about is that patient summaries can serve as the entry point to navigate through a person’s health data offering essential data and links to find additional information.
Good morning ladies and gentlemen.
We have a problem with health data. My premise is that patient summaries can serve as the entry point to health information.
My talk today will be on Trillium II – an initiative that aims to create a community of innovation for the practice of digital health starting from the notion of patient summaries.
And my premise here for you to think about is that patient summaries can serve as the entry point to navigate through a person’s health data offering essential data and links to find additional information.
I am the secretary general of the HL7 foundation.
The vision of HL7 is a world in which everyone can securely access and use the right health data when and where needed.
HL7 was formed in the US in 1986 to connect lab systems for EHRs.
Since then it has been leading innovation in standards: first with CDA, and then spawing out Fresh Look task force,
CIMI and FHIR bringing together the power of APIs and the extensive domain knowledge developed in HL7 over the years.
The European office was formed in 2010 and since then has participated in a number of leading initiatives.
It is the third year that we bring this event to you; bridging a strong a academic perspective to a rather practical on interoperability and standards.
The patient feels sick and seeks healthcare in a country that is not his/her country of origin.
The most frequent situation is that the health professional has no prior clinical information
about that patient and it is not expected that his visit will be repeated. They will not normally
have a language in common.
Trillium Bridge concluded a gap analysis comparing the implementation guides for epSOS and CCD-CCD and managed to identify the shared clinical elements: problems, medications, allergies. It also triggered the creation of interoperability assets: terminology prototype, transformer, and also an account of differences in the IHE profiles in EU and US on patient identity and document query retrieve.
Several validation activities where carried out in EU/US Marketplace, HIMSS, IHE Europe, eHealth Week.
Finally it led to a key transversal recommendation, and 20 thematic ones. The key recommendation is advance an international patient summary standard to enable people to access and share their health information for emergency or unplanned care anywhere and as needed. At a minimum the IPS should include innumication, allergies, medications, clinical problems, past operations and implants.
Speaker Notes:
Sections not included in epSOS PS (or with limited Value Sets):
Test lab results
Non surgical procedure and results
Sections optional in CCD:
Implanted devices
Surgical procedures
Pregnancy (wider than in epSOS)
The IPS Principles
The standards specification for the IPS will be implementable
Promote (the evolution and convergence of) existing standards
Rely on solutions that are already implemented or ready for implementation
Consider new or additional solutions as they become available
The standards specification for the IPS will be applicable for global use
Strive for global accessibility of standards for use at no cost
Strive for a core set of globally accessible and usable terminologies and value sets
Include free text in addition to the structured codes as needed
Do not include local solutions in the core specification that are not available in other jurisdictions
The standards specification will be extensible and open to future use cases and solutions
The IPS provides common content that can be extended and specialized for other use cases, or localized for specific jurisdictional needs
The IPS is open to emerging solutions for unresolved issues or improvements
The standards specifications and their implementation must be sustainable through:
A robust maintenance and update process for the IPS
A process to ensure clinical validity of the IPS, meeting:
clinical requirements (including workflow)
clinical documentation requirements
information quality requirements
Moreover HL7 International and CEN/TC 251 will manage the expectations of the IPS standards specifications among stakeholders, by
stipulating the role of the IPS as a foundation for others to extend
justifying the inclusion of items in the IPS within the limited context of cross-border or cross-jurisdiction unscheduled care.
Note that the last two items are not considered part of a Patient Summary.
Specialty-agnostic means that an IPS is not filtered for a specialty. As an example, allergies are not filtered to the specialty of internal medicine, thus may also include food allergies, if considered to be relevant for, e.g. unplanned care.
Condition-independent means that an IPS is focused on the actual situation (e.g. unscheduled care) and is not intended to represent the entire patient's medical history.
Furthermore the scope of the IPS is global. Although this is a major challenge, this implementation guide takes various experiences and newer developments into account to address global feasibility to the extent possible.
The more relevant consequences of these principles in the template design are:
The adoption of a meet in the middle approach in the templates’ design to balance the need of maximizing the reuse of existing implemented templates (epSOS, C-CDA CCD; IHE PCC…) and facilitate implementation with the need of optimizing the fitness for purpose within the IPS scope. This approach aims to avoid a pure technical exercise of templates harmonization or an academic exercise that does not take in account what is already implemented.
The IPS meet-in-the-middle approach
Cooperate with the HL7 Terminology Authority and the organizations that own the used code systems (e.g. SNOMED International) to make available the IPS value sets for global use at no cost for implementation of the IPS.
When global identifiers are not (or not yet) available, as in the case of the medicinal products, enhance the model proposed for that element with relevant identifying and descriptive attributes that could help the global identification of that element.
Select a set of reference global terminologies, provisioning for the inclusion of the locally used terminologies.
Avoid solutions (e.g. identifiers, terminologies, standards), even promising in the resolution of some of the well-known issues (as the medicinal product identification), that are not yet available for concrete global use. The IPS has been however, already designed, where possible, to be ready to adopt these solutions when they are made available for real use (e.g. the IDMP identifiers) and to already support parts of those solutions that can be used today.
Within the scope of the IPS and of the “implementable” principle, attempt to be enough generic in the design of the templates so that the IPS templates are extensible to support new scenarios, specific specialties, or conditions through templates specialization or adaptation mechanisms.
Let’s focus on the content..
CEN prEN: The Patient Summary for Unscheduled, Cross-border Care
The IPS project works for assuring the compliance and the traceability i order implementable specification actually fullfill the business requirement
From deployment perpsctive the IPS project is aware about the importance of the conformance (assessment) and any kind of conformance support to implementers
Martha’s patient summary: a traveling corporate executive
Martha, a 45-year old corporate executive and breast cancer survivor travels frequently on business between the US and EU countries. She carries a clinical summary including a plan of care on her mobile phone and on paper just in case she needs to seek medical care regarding recurring symptoms.
HEALTH CONDITIONS(e.g. includes current health problems that the person is being treated for, as well as chronic conditions and disabilities)
HEALTH CONDITIONS(e.g. includes current health problems that the person is being treated for, as well as chronic conditions and disabilities)
The point is that barriers to current data sharing will also exist for sharing and use of patient summaries.
First meeting held Aug 5, 2013
Incorporated as a not-for-profit corporation on Aug 22, 2014
3 Benefactor members
Veterans Administration
Louisiana State University Health
Intermountain Healthcare
Key alliances
Center for Medical Interoperability (C4MI)
OSEHRA
3 Associate (organizational) members
Regenstrief
Motive
Allscripts
11 Individual members
Society Members: AMA, MHII and ACOG
Create an open shared repository of “logical models” in an agreed format
Import existing content whenever possible
Select one approved logical model for a given kind of data in a given context (data entry, data retrieval and analysis)
Create “approved” mappings to standard implementations
Caveats
This is the first meeting of a “campaign” or a “crusade”
This is a huge project – it will take many years
This is an essential first step to semantic interoperability. We also need
Security
Legal basis for sharing data
Aligned incentives for sharing data
HL7 meeting in San Antonio January 2012
30 something, newly married, planning for a family
Expert informaticist
Ran a half marathon 2 weeks before the HL7 meeting
Fever, nausea and vomiting, collapsed, taken to a community hospital
Unrecognized sepsis, died of untreated septic shock
The clinicians involved were not “bad” people. They were just busy and did not apply all the knowledge that they had.
If you are a practicing clinician, you are very lucky if you haven’t been involved in a similar bad outcome. I was, as a first year Internal Medicine resident. (Acute abdomen in a really tough cowboy. I frail old woman vomiting blood.)
$1.2 billion to install an EHR system
We do the right thing about 50% of the time
250,000 deaths per year due to medical errors - NPR
http://www.npr.org/sections/health-shots/2016/05/03/476636183/death-certificates-undercount-toll-of-medical-errors
440,000 deaths per year due to medical errors – Northwestern
https://news.northwestern.edu/stories/2016/11/how-to-prevent-440000-yearly-deaths-due-to-medical-errors/
~35,000 deaths per year from automobile accidents, estimated 40,000 in 2016
When did it become socially acceptable to have a quarter of a million people die each year from medical errors?
It is like trying to do thermodynamics before there were reliable thermometers
Each EHR vendor uses a proprietary database schema, proprietary models and unique terminology to represent clinical data
Some standardization of codes is now occurring, but
Data is not consistent vendor to vendor, or even organization to organization within the same vendor
This means that:
Sharing data is difficult
Sharing executable software across vendors is impossible
Each useful application is created or re-created on each different platform (and we pay for it!)
There are unmet needs for health care applications and decision support
Software costs are higher than they need to be