Chronaki, Catherine

de Faria Leão, Beatriz

Fridsma, Doug

Kimura, Michio

Moen, Anne

Rasmussen, Morten Bruun

Scott, Philip James

English

Portsmouth University Research Portal (Pure)

Patient Summaries: An International Perspective 
Catherine Chronaki
a
, Philip Scott
b
, Beatriz de Faria Leão
c
, Michio Kimura
d
,  
Morten Bruun Rasmussen
e
, Anne Moen
f
, Doug Fridsma
g
 
a
HL7 Foundation, Brussels, Belgium, 
b
School of Computing, University of Portsmouth, UK, 
 
c
Hospital Sirio Libanes, São Paulo, Brazil, 
d
Department of Medical Informatics, Hamamatsu University Hospital, Japan, 
 
e
MEDIQ, Odense Denmark, 
f
University of Oslo, Norway,
 g
American Medical Informatics Association, United States 
 
Abstract 
Patient Summaries, excerpts of Electronic Health Records 
used most frequently for emergency or continuity of care, have 
received a lot of visibility in the context of eHealth strategies 
and standardization efforts. Interoperable patient summaries 
that can be exchanged safely and accurately across borders of 
organizations, health systems, regions, and countries, are 
perceived as the key for patient safety, as well as efficient and 
effective care. In the European Union (EU), the eHealth 
Network established under Article 14 of the directive on 
patient rights to cross-border care 2011/24/EU [1], adopted 
in 2013 the guidelines on minimum non-exhaustive patient 
summary dataset [2] triggering attention to patient summary 
specifications throughout Europe. These patient summaries 
should include inter-professional dimensions to attend to 
complexities of care across the patient’s longer-term 
trajectories. Ιn the United States, the Blue Button initiative 
aims to empower citizens giving them the opportunity to 
download their patient summary after a medical visit. Japan 
and Brazil proceed with standardization projects for 
discharge summaries, offering the opportunity to compare and 
contrast different approaches.  This workshop brings together 
speakers from Europe, the United States, Asia, and Latin 
America to discuss key aspects, types and uses of patient 
summaries, how they are produced and maintained overtime, 
and point out challenges of standardization, consolidation 
and harmonization in an increasingly mobile global world. 
The attendees will learn about initiatives surrounding patient 
summaries to gain awareness of key issues and associated 
problems around the globe. Such opportunities to engage in 
active discussion on how local standards relate to global 
interoperability of patient summaries can pave the way 
towards international standards. 
Keywords: 
Electronic Health Record; Patient Summary; Interoperability, 
discharge summary, continuity of care, global standards. 
Workshop Description 
Nowadays, leading a life increasingly digital and mobile, we 
rely and depend on technology for key activities of daily 
living. In this setting, availability of up-to-date emergency 
health data online is an issue of patient safety and quality of 
care. However, emergency data is just one type of patient 
summary. Other popular types of a patient summary are 
discharge summaries, the so-called continuity of care record, 
lab reports, encounter reports, etc. Considering the clinical 
summaries addressed to specific medical specialties and 
medical problems as chronic diseases, the number of patient 
summary types increases dramatically and calls for 
interdisciplinary collaboration. Even when using the same 
underlying standards and terminologies to express a specific 
type of patient summary, e.g. discharge letter, differences in 
language, care and treatment, culture, and policy lead to 
essentially different clinical elements and value sets. Such 
differences are important, but sharing information can be 
instrumental in informing local initiatives and expanding 
interoperability. 
Another lens to view patient summaries is the way they are 
constructed, maintained, and shared. Some countries or 
regions in Europe have the patient summary automatically 
generated from the most up-to-date available health 
information. Providers may prepare a patient summary when 
the patient is transferred. In other countries the assigned 
General Practitioner serves as a gatekeeper and maintains the 
patient summary. There are pros and cons in these strategies 
that merit reflection, particularly in the context of health 
information technology infrastructures for longitudinal health 
records. 
In this workshop, speakers from Europe, the United States, 
Japan, and Brazil will present different activities and projects 
related to patient summaries that effectively and efficiently 
communicate information at the place of need. Key topic in the 
discussion will be how to strike the right balance between 
local and global patient summary standardization efforts and 
the role that professional societies are invited to play. 
Workshop Speakers and Topics 
European Patient Summary and Trillium Bridge 
Catherine Chronaki, MSc will present the main elements of the 
European Patient Summary Guidelines and the ways in can be 
maintained and exchanged. She will address findings of 
Trillium Bridge, a European project to compare patient 
summaries in Europe and the US and to investigate the 
feasibility of transforming patient summaries in ways that 
make them fit for use across the Atlantic and potentially 
globally [3]. She will describe different types of patient 
summaries and infrastructure to construct and maintain them.  
Catherine Chronaki is Secretary General of the European HL7 
Foundation. She has engaged in eHealth projects since the 
early 90’s. Co-author to 100+ scientific papers, she is member 
of the European Federation of Medical Informatics (EFMI) 
Council, the European Society of Cardiology (ESC) e-
cardiology WG, and the HL7 Hellas Board. 
Headings for a consultation summary, United Kingdom 
The Royal College of Physicians (RCP) worked with patients 
and other professional bodies to produce the first version of 
generic medical record keeping standards in 2008 [4]. In 2010, 
the Department of Health appointed a Joint Working Group to 
resolve the governance of multi-professional standards for the 
content and structure of patient records. The Joint Working 
Group noted that “Technical standards alone do not ensure the 
ability for information systems to transfer interpretable health 
data around the NHS” [5]. The Professional Records 
Standards Body for health and social care (PRSB) was formed 
in 2013 as a collaboration between the medical and nursing 
royal colleges, patient groups, and the professional bodies for 
allied health professions and social care. 
The Professional Records Standards Body for health and 
social care (PRSB) was formed in 2013 as a collaboration 
between the medical and nursing royal colleges, patient 
groups, and the professional bodies for allied health 
professions and social care. During 2014, PRSB ran a proof-
of-concept project to determine whether, and if so how, 
selected PRSB standards could be verifiably implemented as 
conformant technical artefacts [6]. This work demonstrated 
how the outpatient headings could be used as the basis for a 
consultant summary letter to the referring general practitioner. 
The project included a comparison between the data content of 
the outpatient headings and the epSOS extended patient 
summary data set [2]. The two definitions have very different 
use cases, so their divergence is unsurprising. The comparison 
highlighted some gaps in the generic medical record headings 
and some significant differences in information structure, 
notably in the Medication Summary. There are also 
differences in perspective between a longitudinal summary and 
a ‘transactional’ outpatient letter. The learning from the proof-
of-concept project is now being applied to the modelling of 
Discharge Summary. 
Dr Philip Scott MSc PhD is a Senior Lecturer in Information 
Systems in the School of Computing, University of 
Portsmouth, and the Chair of HL7 UK. 
Discharge Summaries in Japan 
Michio Kimura, MD, PhD will provide an update on patient 
summary activities in Japan. So far, HL7 v2 orders and Patient 
Referral documents in HL7 CDA R2 are standards adopted by 
the Ministry of Health in Japan. Currently, updated referral 
documents, discharge summery, other types of specialized 
reports from diagnostic radiology, cardiology, and pathology 
in HL7 C-CDA [7] are in the process of receiving approval by 
the Ministry. In Japan, main efforts of standardization is not on 
the medical record contents, but on document exchange 
between healthcare providers. 
Michio Kimura is a professor of Medicine, and Medical 
Informatics, and director at Medical Informatics Department 
of Hamamatsu University Hospital, Japan. He is currently 
IMIA vice-president for membership, President of Japan 
Association for Medical Informatics (JAMI), HL7 Japan chair, 
ISO TC215-WG2 vice convener, and IHE (Integrating the 
Healthcare Enterprise) International board member. 
Prof.Kimura was past-president of APAMI, the Asian Pacific 
Association of Medical Informatics. 
Discharge summary proposed standards in Brazil 
Beatriz de Faria Leão MD, PhD will provid e an update on 
discharge summaries in Brazil. The Brazilian ISO TC 215 
mirror committee (ABNT - CEE-IS) has been working in the 
proposal of a national standard for the Hospital Discharge 
Summary. The work was led by more than experts from WG1 
- Architecture, Frameworks and Models of ABNT-CEE-IS, 
from different backgrounds: public and private sector, 
academia and government. The proposal took into account the 
international experience, especially from UK and Australia as 
well as national information requirements both from the public 
and the private sector. The main objective was to define an 
information set to support the continuity of care of the patient 
after the hospital discharge. The main sections of the Brazilian 
Discharge Summary include patient, provider and health 
professional identification elements, which are linked to 
associated national registries. Additional elements include [8]: 
Reason for admission, relevant diagnoses and/or comorbidities 
developed during the hospital admission; List of current health 
problems; Diagnostic / therapeutic procedures; surgical 
procedures performed; Textual description of the hospital 
admission; Allergies and adverse reactions during hospital 
stays; Hospital Discharge Prescription; Patient and Family 
Orientation. The Discharge Summary proposal is currently 
under national public consultation for one month, till mid 
February 2015. It will be revised and published as a national 
standard at the most in April 2015. This is the first national 
standard that aims to support the continuity of care through the 
different levels of healthcare attention. 
Beatriz de Faria Leão MD, PhD, has been active in health 
informatics since 1982 and co-founded the Brazilian Health 
Informatics Association (SBIS). Beatriz is with the Hospital 
Sirio Libanes in São Paulo, where she coordinates the 
Graduate program of Health Informatics. Beatriz is the 
convener of WG1 Frameworks, Architecture and Models of 
the Brazilian Mirror ISO TC 215 Committee and Vice-
Convener of this same WG at ISO TC 215. She’s also the 
coordinator of IMIA Standards WG and President Elect for 
the Brazilian Health Informatics Association (SBIS 2014-
2016).   
Patient Summaries for Telemedicine in Denmark 
In Denmark ITC strategies for the Health Sector has been 
formulated in the past 25 years. The strategies have been a 
valuable tool for agreement and ensured incremental 
development of ITC solutions and services to support the 
workflow and collaboration in a fragmented health care 
system. In Denmark, Patient Summaries can be created to “fit 
the purpose” by accessing selected data in the many different 
solutions and repositories where new solutions are added every 
year. Currently, the area with highest priority in Denmark is 
telemedicine services and collecting health data from citizens. 
The purpose is to set a framework for Danish-profiled 
standards for the collection, communication and storage of 
data from devices in the patient's home, as well as sharing of 
data from existing ITC solutions and repositories. 
In recent years, several pilot telemedicine projects have been 
completed and have provided the various healthcare providers 
with greater knowledge about the possibilities for using 
telemedicine. However, many of the projects have been 
established as separate, independent projects that have not 
been linked to the overall use of eHealth. Each project has 
ended up with its own solutions and architectures and has 
applied different technologies. The fact that the various 
solutions do not 'speak the same language' (i.e. that the 
semantic content has been perceived differently) has 
obstructed the dissemination of solutions. 
A new strategy have been formulated, with the goal to 
establish a new national telemedicine infrastructure, to 
accelerate the dissemination and to reduce the costs of 
establishing and further developing telemedicine solutions. It 
is high time that the solutions developed during the past 25 
years together with a new telemedicine infrastructure will 
enable access to correct and valid data for point of care. 
Morten Bruun Rasmussen is an engineer, computer scientist 
and CEO in MEDIQ. He has been working with Medical 
Informatics and Quality Development for more than 25 years 
within it-strategies, procurement, evaluation, interoperability 
testing, and health care networks. 
Meaningful Use and Blue Button in the United States 
Douglas Fridsma MD, PhD will bring the United States 
perspective with Meaningful Use and a system of incentives 
[9], and will reflect on the implications of continuity of care on 
the design and operationalization of patient summaries. Under 
the stimulus bill (American Recovery and Reinvestment Act), 
congress authorized the Office of the National Coordinator for 
Health IT to certify electronic medical records to certain 
standards and capabilities, and then offer incentive money to 
physicians who demonstrated the use of health IT to achieve 
certain quality and process objectives. As part of the 
certification program, electronic medical records in the US are 
required to have the capability of generating a clinical patient 
care summary using an HL7 standard format. That same 
format is used to electronically share health information with 
the patient through an initiative called “the blue button”. As 
the meaningful use program has matured, document-centric 
ways of exchanging information using the care summary 
standard is giving way to more data-centric ways of 
exchanging information that lever the patient summary data 
elements.  
Dr. Douglas Fridsma is the President and CEO of the 
American Medical Informatics Association. Dr. Fridsma has 
spent four years in the Office of the National Coordinator for 
Health Information Technology, most recently as the Chief 
Science Officer where he was responsible for the scientific and 
technical strategy for the ONC portfolio of technical resources 
to support the meaningful use program and health information 
technology interoperability. 
Interdisciplinary, longitudinal dimensions in the summary 
Anne Moen, RN, PhD will address the importance and 
necessity to account for interdisciplinary collaboration, 
contributions and responsibilities in the discharge summaries 
to ensure continuity of care across settings. This is particularly 
important for complex care and treatment of patients with 
chronic conditions and multiple co-morbidities, like the 
elderly. 
Dr. Anne Moen is professor at the Institute for health and 
society, Faculty of Medicine, University of Oslo. She has been 
active in health informatics research for the past 30 years. 
Representation of information and knowledge, in particular the 
ageing to assist their health information management and self-
care. She serves as president of EFMI (2014 – 2016).  
General Organization of the Workshop  
Organization  
Catherine Chronaki and Douglas Fridsma will co-chair the 
workshop. Following a 5 minute presentation by each of the 
presenters and a Questions and Answers session, the audience 
will engage with the speakers to elaborate the challenges of 
leveraging local insight and global vision in standards 
development and adoption. At the end of the session, the 
speakers will articulate main insights from the discussion and 
jointly formulate a call for community engagement to advance 
understanding of clinically relevant patient summaries fit for 
local purpose, leading to effective global interoperability 
standards. 
Audience 
The expected audience of the session are clinicians, medical 
informaticians, terminologists, eHealth advocates, project 
managers and policy makers. 
Expected Results 
This workshop aims to bring international perspective to the 
notion of patient summary to: (a) inform of ongoing initiatives 
related to patient summaries and in particular their creation 
and maintenance; (b) reflect on the common elements of 
patient-summary related activities; (c) discuss on going 
standardization efforts in the area and the prospects and 
challenges of developing an international patient summary 
standard. 
Acknowledgements 
The work presented here is supported in part by the eStandards 
project which is co-funded by the European Commission 
under grant agreement 643889–eStandards: eHealth Standards 
and Profiles in Action for Europe and Beyond. 
References 
[1] Directive 2011/24/EU of the European Parliament and the 
council of March 9, 2011 on the application of patients’ 
rights in cross-border care. Official Journal of the 
European Union, 4.4.2011, L88/45 
http://tinyurl.com/lx6fxza  
[2] Guidelines on minimum/non-exhaustive patient summary 
dataset for electronic exchange in accordance with the 
cross-border directive 2011/24/EU 1.0, adopted by the 
eHealth network on Nov 2013. http://tinyurl.com/mcj8rpl  
[3] Trillium Bridge: Bridging Patient Summaries across the 
Atlantic, www.trilliumbridge.eu [last access January 22]  
[4] Carpenter I, Ram MB, Croft GP, Williams JG. Medical 
records and record-keeping standards. Clinical Medicine. 
2007;7(4):328-31. PubMed PMID: 17882846. 
[5] RCP. Clinical leadership at every level essential in health 
records, say RCP and BCS. 2012 [cited 2014 10 October]. 
Available from: http://tinyurl.com/mqshqlq  
[6] Scott P, Bentley S, Carpenter I, Harvey D, Hoogewerf J, 
Jokhani M, et al. Developing a conformance methodology 
for clinically-defined medical record headings: A 
preliminary report. Eur J Biomed Inform. In press. 
[7] HL7 Implementation Guide for CDA Release 2: IHE 
Health Story Consolidation, Release 1.1 - US Realm 
http://tinyurl.com/lh6xw9h   [last access Oct 20, 2014] 
[8] Information model of the discharge summary is accessible 
in GT1 site: http://gt1.medicina.ufmg.br/. 
[9] Centers for Medicare and Medicaid Services (CMS), 
Regulations and Guidance, EHR Incentive Programs: 
http://tinyurl.com/l6cn5pa  [last accessed Oct 20, 2014] 


Bridging Patient Summaries across the Atlantic, www.trilliumbridge.eu [last access

Clinical leadership at every level essential in health records, say RCP and BCS.

Developing a conformance methodology for clinically-defined medical record headings: A preliminary report. Eur J Biomed Inform.

Directive 2011/24/EU of the European Parliament and the council of March 9,

Guidelines on minimum/non-exhaustive patient summary dataset for electronic exchange in accordance with the cross-border directive 2011/24/EU 1.0, adopted by the eHealth network on

Information model of the discharge summary is accessible

Medical records and record-keeping standards. Clinical Medicine.

Patient summaries:an International Perspective

Patient summaries:an International Perspective

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