De castro cerlis. Communicating science: rules, formats and best practices. Experience from a research institute for public health.

THE LANGUAGE OF MEDICINE: Science, Practice and Academia. Univ. Bergamo, 19-21 June, 2014

Communicating scienceExperience from

a research institute for public health

Paola De Castro

Director of the Pubishing UnitIstituto Superiore di Sanità, Rome, Italy

European Association of Science Editors (EASE )

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2THE LANGUAGE OF MEDICINE: Science, Practice and Academia. Univ. Bergamo, 19-21 June, 2014

FOCUS

appreciate differentiation strive for academic excellence provide insights for practice

AIM: inspire “evidence based” collaboration

The added valueof a multidisciplinary approach to open science addressing innovationin a global dimension

Main topics


Background information

Publications as a way to study the language of science

Responsibilities in communicating science

Training scientists in scientific communication

Editorial standards and guidelines

Some ISS collaborative projects fostering the translation and

dissemination of scientific contents to different targets


ISTITUTO SUPERIORE DI SANITÀNational Institute of Health in Italy

Mission: Research for public health

Research, advice, control, training, documentationin PUBLIC HEALTH

diseases, environment, drugs, food safety, health technologies,life styles, epidemiology

Established

in 1934


Fight against malariaDDT on Pontina swamp,1946

Penicillina Factory , 1952

6

For 15 years it was the only governmental production plantproducing low-cost antibiotics



A story of Nobel Prize winners…

D. Bovet E.B. Chain

E. Fermi R. Levi-Montalcini


ISTITUTO SUPERIORE DI SANITÀas an editor of scientific publications

Editorial work has a fundamental role in a research instituteand allows to study and shape the language of science

The ISS official journal started in 1938,since 2000 is online as all ISS publications

Publications as a way to study the language of science


Hints from experience at the Publishing Unit of the National Institute of Health in Italy

Different ways of translating scientific contents


Publishing Unit at the Italian NIH

ActivitiesPublicationsDigital archiveResearch projectsCooperationTrainingExhibitions

How many publications ISS today?

11

900 researchers (tot staff 2000)

about 1800 publications per year

83 82

73

6562

58

46

1410

75 4 3 3 2 1

54

145

53

46

103

31 32

8

2123

2 1

63

44

10

106

67

0

25

50

75

100

125

150

MIPI CNE BCN FARM AMPP TES SPVSA EOMM CRIVIB CSC CNMR CNAIDS CNT SBGSA CNS SIDBAE URE

Non Indicizzate

Indicizzate

Non Indicizzate

Indicizzate

30% ISS series

Annual report ISS 2013

60% in English


ISS as contributor and publisher of scientific literature Conventional biomedical (journals) and grey literature

ISS conventional journals and grey production


The Publishing Unit has a privileged position to

Observe trends in scientific language (OA, publication metrics)Play a “Regulatory role” in setting rules through “instructions to authors” and control on the editorial process

Become aware of information needs at different levels from the inside


Rendiconti, now Annali 13

1938-19411941-1965

1965-2005

2006, 2011, IF

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2013- 2014

Indexed in

ISI, MEDLINE, EMBASE/Excerpta Medica, CHEMABS, PASCAL, SciELO

Peer reviewed science journal in English

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Grey literature Rapporti ISTISAN

All information that could not be published in conventional journals, due to extention and detail.

Since 1977 they publish research activity, data, proceedings, technical specifications

Now, divided in 5 research areas



2001

1988 1996

2003 2004 2005-

1990

Notiziario dell’ISS

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Monthly bulletin on current research, includes the National Epidemiological Bulletin Started in 1987,online since 1996

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Established in 1985, they publish the abstracts of congerence communications and posters organized by ISS.

Printed and online available befroe the Conference


Grey literature ISTISAN Congressi

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Publications addressed to schoolsSince 2001They publish updated information on health issues of general interest for schools


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LeafletsGeneral information on ISS and its activity


Historical videos

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Interviews to recover pieces of our history through oral memories of old or retired staff

From the glass blower, to the carpenter, to reserchers who worked in environmental disasters, to those who worked with the Nobel laureates...

Transcripts are available


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Heritage publicationsI beni storico-scientifici dell’Istituto Superiore di Sanità

Since 2005, to safeguarde, preserve and study the ISS heritage in different stages of its development

From the history of the Laboratory of Therapeutical chemistry (Directed by Prof. Daniel Bovet (1947-1964), to the description of scientific instruments, the history of electronic microscopy (1942-1992), the laboratory of malariology, the collection of rare books, proceedings of historical conferences, history of curare, the role of oral memories...



100 year birthday of Rita Levi Montalcini(April 2009)

Original interviews as a gift for a special birthday

Publications produced for special events


Narrative medicine

Experience in Narrative Medicine and Rare Diseases (CNRM)

Narrative medicine (medical humanities) is a medical approach that

recognizes the value of people’s narrative in clinical practice, research and education


The Flight of Pegasus is a prize started in 2008 by National Centre of Rare Diseases at ISS. It is addressed to patients, their families and friends, no age limit, to

• Provide space for expression and visibility for people with rare diseases, through artistic and literary channels (stories, drawings, paintings, pictures)

• Raise awareness for rare diseases, not only with a view to suffering, but also to human dignity to promote active citizenship.

Why Pegasus? Pegasus is the winged horse, symbol of wisdom, representing the strength to hover off the ground and make a journey into the unknown. The journey that many rare disease patients and their families make every day.

Posters & exhibitions for the general public


Science Pic Nic Warsaw, May 2014

Games to involve the general public on the importance of corrert life styles

Diet,Physical excercise,Etc.

THE LANGUAGE OF MEDICINE: Science, Practice and Academia. Univ. Bergamo, 19-21 June, 2014 25

It is a responsiblitity that must be recognised and undertaken with the same commitment and professionality as for all the other science-related activities

Responsibilityof science communication

For all people working in Research and Development

Information transfer is an ESSENTIAL part of their work

Levels of responsibility

THE LANGUAGE OF MEDICINE: Science, Practice and Academia. Univ. Bergamo, 19-21 June, 2014 26

Progress is always based on previous work

Peers need to be informed

Patients need to be informed

All stakeholders (policy makers, general public) need to be informed and become aware of the value of scientific research

Health is a common good

We live in a “global” world

Health information should be available for all (OA)

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represent the dynamic memory of science (started in 1660) rely on a consolidated know-how and editorial structure guarantee quality control, dissemination, indexing and impact

evaluation of published articles.

Despite the changes introduced by the Internet in communication,scientific journals still represent the most widely recognized means for communicating research results of among peers.

Role of scientific journals

Scientific journals:


http://en.wikipedia.org/wiki/File:1665_journal_des_scavans_title.jpg

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Journals (and books) change their shape

• Blogs• Discussion lists• Wikis• Online answers• Social networks• Collective conversations

All this deeply affects scientific communication

New ways are developed

TODAY INTERNET allows new ways of communication


INTERNET adds complexities to the editorial process and at the same time it makes it faster and accessible to different stakeholders

Ronald La Port. BMJ 1995, 2002

Death or metamorphosis of scientific journals?

Searching new balance among different interests

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Information dissemination including both

publication and data is strictly associated with research activity in the process of creating knowledge on the basis of existing knowledge.

OPEN ACCESS

Researchers and health operators must assume such

responsibility as part of their commitment (social implication)

Open access to research information and data is therefore

a moral imperative and is recognised as such by many research performing and funding institutions

(NIH, Wellcom trust, European Commission (H2020), ERC, OCSE, etc.)

SPARC Workshop at EAHIL ● Rome, 10 June 201431

Global health has no borders

Access to health information

is critically important for all human beings,

it often makes the difference between like and death,

and as such is an important component of human rights

Shocking data on child mortalityto reflect on the role of health information

Each year, around 9 million children

die from preventable and treatable illnesses

Health knowledge can often mean the difference between life and death

The handbook produced by UNICEF, WHO, UNESCO provides vital messages and information for mothers, fathers, other family members and caregivers and communities

Example

IMPACT OF INFORMATION IN PUBLIC HEALTH Scientists (progress of science) Policy makers (regulations, fundings) General public (behavioural change)

Social value of knowledge,

Scientific communication as a civil commitment

Scientists, in their role of knowledge gatekeepers, should play an active role in public discussions on science

Trust in scientists role • Spread knowledge• Face challanges

HEALTH, INFORMATION, HUMAN RIGHTS

Universal Declaration on Human rights, 1948, Article 25.Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family

Definition of Health World Health Organization, 1948Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity

Access to information Is an essential component of human rightsToday people still die for lack of information

Open Access= equality in health

Right of information According to the International Human Rights Law, governments have the legal obligation to ensure that all citizens and health operators have access to the appropriate health information they need to protect their health and the health of the other people

NY Law School, 2012


Ethical responsibilitiesaffecting all the actors of the editorial process(authors, editors, reviewers, editorial staff) and beyond

- Authorship- Integrity (falsification)- Copyright (plagiarism)- Privacy and confidentiality- Conflicts of interest (bias)- Freedom of information

Committee on Publication Ethics

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Training scientists

to recognizethe most appropriate communication tool according to targets and context

Main target of IS training activities: health personnel in Italy and other countries in Europe, Latin America, Africa


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journal articles technical reports oral communications or posters

in conferences or workshops abstracts and proceedings social media etc.

researchers, medical & technical staff

patients, families, policy makers, community health workers, media, etc.

oral communications leaflets, bookmarks, posters audiovisuals workshops, informal meetings e-health communication social media etc.

PEERS LAY PEOPLE

share research results, progress in research, contribute to debate

change behaviour, improve life style, access to therapy, increase retention

type

objective

target

Different targets, objectives & types of scientific communication


NECOBELAC project

Paola De Castro, NECOBEALC project CoordinatorIstituto Superiore di Sanità

An example of sustainable activities to promote scientific writing and OA publishing in a wide geographical area

NECOBELAC project in brief

It is a European project (2009-2012) “Science in Society” working in the field of PUBLIC HEALTH

improve scientific writing promote open access publishing models foster technical and scientific cooperation

between Europe and Latin America

www.necobelac.eu

Network of Collaboration Between Europe & Latin American-Caribbean countries

It aims to:

All actors taking part in scientific communication processTARGET

Sparc Europe workshop, EAHIL, Rome 10 June 2014

NECOBELAC key points

This approach offers mutual benefits EU-LAC and supports cultural change in production, use and dissemination of health information

BI-DIRECTIONAL APPROACH sharing experiences and initiatives between Europe & Latin America within a common strategy

MAIN ACTIONS1. Two level training activity2. Innovative training tools3. Networking & cooperation activity

interrelated


8 courses in EU and LAC

TRAINING REPLICATION

TRAINING COURSES FOR TRAINERS

T1

T2

TWO-LEVEL TRAINING ACTIVITY

(assisted and supported by project partners)

8 Training for trainers (T1)

>45 Local training replications (T2)

Brazil Sao Paolo 2010 Italy Rome 2010Colombia Bogotà 2010Spain Madrid 2011Argentina Buenos Aires 2011Portugal Braga 2011Mexico Guadalajara 2011Ireland Dublin 2012

15 countries in the network

4 Europe + 11 Latin America

>200 institutions

Figures from NECOBELAC training

Lessons learnt: listen, be flexible, provide support and teaching material


Scientific publication

NECOBELAC topic maps

GL authors and issuing organizationsshouldbe aware of the entire information life cycle


NECOBELAC topic mapsOpen access

Librarians, authors, editors, publishers and all stakeholders shouldbe aware of OA challanges and opportunities



Open Access Journals

Introduction to Open Access

Open Access Repositories

Open Access Policies

NECOBELAC model training program

OPEN ACCESS

OA publishing models represents the greatest challenge for health information dissemination


Examples of diversity in NECOBELAC local training initiatives

>50 training coursesin EU and LA(8 courses for trainers)

Topic maps as innovative training tools

> 200 institutions in a network

Final results of the NECOBELAC project

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Training in scientific writing and open access publishing: the NECOBELAC project experience in Europe and Latin America.

Quito, Ecuador, Noviembre 2011

Abstract book Italian/Spanish

Collaboration within NECOBELAC project network (still ongoing): linking public health & information communication

MontevideoUruguay, March 2012

Examples of OA training and research for public health, including Italy (ISS, IILA), Colombia (ISP), Ecuador (UTE), Uruguay

Italia, Argentina, 2010

Italia, UK, Cuba, 2011

Rare diseases

Paediatric pharmacology

AMBIENTE Y SALUD

ISEE - International Society of Environmental Epidemiology, 2011

QuitoEcuador, March2014Bogotà

Colombia, February 2014

Ongoing projectsdeveloped thanks to the existing networks and experience

• Research HIV/AIDS• Training

clinical aspects, statistics and communication

Asbestos project

• Research on asbestos• Dissemination of

information on asbestos and related diseases

(Latin America)

CASAProject

Cohort of African People Starting Antiretroviral therapy in Ethiopia

Training and dissemination material in two languages


Enhancing scientific research results through the publication of open access journal articles. A suggested training program.

Scientific contentsEnvironmetal and Occupational healthMortality data, Health risks+Communication issuesScientific writing

13/31

Contribution to training and prevention of asbestos related diseases. In English and Spanish

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Why communication skills are important to reach CASA project objectives

Paola De Castro

S. A .C . A .

Basic training programin scientific communication

Head of the Publishing UnitIstituto Superiore di Sanità, Rome (Italy)

EXAMPLE OF CASA TRAINING

Mekelle University, 26 May 2014

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Improve the quality of care of patients with HIV

and related co-infections in Tigray

CASA PROJECT OBJECTIVE

HOW?

communication, scientific writing, information searching, evaluation,

organization of workshops, strategic planning, presentations in meetings, etc.

Evidence based!!!

Research and training

statistics

clinical aspects

communication


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National Institute of Health Istituto Superiore di Sanità

TEACHING & LEARNING are strictly connected

ITALY

Mekelle University, Tigray Health Bureau, health facilities

ETHIOPIA

different backgrounds

share knowledge to improve quality of care of HIV infected patients

S. A .C . A .


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My first visit in Mekelle

January 2014

The importance

of the human factor

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Target groups of the training in communication

Physicians/Researchers/working in university and hospitals

Health workers nurses, health officers, physicians,case managers

Community based organizationscommunity health workers, women associations, patient associations, etc.

1 2 3

Different

types of

translation

From one language to another language

From one culture to another culture

Form scientific/technical language to common language

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LESSONS

on scientific communication

Target groups

Health workers

Community

based

organizations

Physicians,

researchers, case

managers

1. Communication skills: easy when you know how

x

x

x

2. The basic structure of a journal article x x

3. Citing the work of others x

4. Communication through social media x x

5. How to select the right journal to publish your article x x

6. Basic scientific knowledge on HIV/AIDS x x

7. Why networking is necessary . The train-the- trainer approach x x x

8. Strategic planning for community health workers: SMART objectives x x

9. Building your own strategy to work with HIV/AIDS patients & families x

10. Searching online medical information (basic) x x x

11. Information sources on HIV/AIDS (for health operators) x x

12. Information sources on HIV/AIDS (for patients and the general public) x x

13. How to communicate research results in meetings and workshops x

A personalized training path is

suggested for each target group

Editorial standards and guidelines have a direct impact on the language of science


Authors must comply with instructions for authorsand refer to strict editorial guidelinesto get published

Instructions from over 6000 biomedical journals

First step before starting to write the article and last step before submission!

“Vancouver style”, a reference toolfor publication in medical journals


Recommendations for the conduct, reporting, editing and publication of scholarly work in medical journals.

Started in 1978 to standardize citations, now is a common standard containing ethical and technical considerations

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And

The IMRAD structure

IntroductionBackground informationState specific purpose of the study Limit referencesDo not include data or conclusions

Material and methodsDescribe (patients, animals, etc.)Define material and equipmentIllustrate proceduresCompare with other methods

ResultsShow results in logical orderPoint out only relevant data

Discussion and conclusionsStress only new aspectsDo not repeat what was written in the methodsAvoid conclusions which are not associated to reliable data

Example


EQUATOR, a portal of guidelines for good reporting of health sciences research


Seminario Internacional Salud Ocupacional y ambiental - Quito, 22-24 Febrero 2014

Incluyen ejemplos prácticos, incluso de errores frecuentes en la traducción


MEDICAL SUBJECT HEADINGS


In brief: - have a good content to communicate - be aware of rules and apply them- have a strong motivation to do so

The language of scienceConcise, simple, clear

Imagination is more important

than knowledge

Einstein teaches

Texts should be complete in each part

“”

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ExampleREVISION: different levels of responsibility

• read instructions to authors• read again after some time (one-two days)• use check lists

A paper may be rejected by the editor, IF… • it is not compliant with journal scope & formats• it has poor English

Minor revisionsMajor revisions

Revision improves quality & provides a learning opportunity

Authors! Take it seriously!Be prepared to answer all points raised by reviewers

4. TECHNICAL EDITINGafter acceptance

Journal editorial staff

1. AUTHORS’ REVISION before submission

2. INITIAL EDITORIAL REVIEW after submission (before peer review)

3. PEER REVIEWafter submission


Other collaborative projects

fostering translation and dissemination of scientific contents to different targets

research projects science games Pilot ECDL Health

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European Association of Health Information and Libraries

E-BUG, a game to empower students on prudent use of antibiotics(microbiology)

Seminario Internacional Salud Ocupacional y ambiental - Quito, 22-24 Febrero 2014

Create, translate and adapt scientific contents in different contexts


The heart of the ECDL Project is a Syllabus summarising the basic competences health professionals should have to get the diploma ECDL HealthDoc

Pilot ECDL HealthDoc

1 Sources of health information2 Access to full-text information3 Web information quality4 Research evaluation5 EBM documentation6 Scientific writing7 Health information for citizens and

patients 8 Web 2.0

Bioresource Research Impact Factor

Example of a positive collaboration between scientists and journal editors to establish a standardised citation of bioresources in order to be properly evaluated.

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BRIF

VisionGreater gender balance in science and publishing practices for enhanced quality, diversity and transparency, for science to remain at the forefront of innovation.

Mission: To advance sex/gender reporting and gender balance in editorial management on a global level, and across disciplines.

EASE Gender Policy Committeetowards a common standard for gender policies in scientific reporting

Our tool: A Common Standard

Baseline: International Gender Survey

EASE GPC mission: To advance sex/gender

reporting and gender balance in editorial

management on a global level, and across

disciplines

http://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&docid=qx5sp_GjMgIFGM&tbnid=LAXav3xACm-BlM:&ved=0CAUQjRw&url=http://loadpaper.com/brick/brick-road-stock-photo-image.html&ei=Q5_KUo_aK6Ty0gX5soD4DA&bvm=bv.58187178,d.bGQ&psig=AFQjCNFynfEZ3P41chva-cfRbbsLxPqSLQ&ust=1389097124626655

So what next?

Expert Consultation (May 2014) Public Consultation (Split – June 2014) Revision of the Common Standards Publications and dissemination Advocate for its endorsement and

implementation Monitoring

Join EASE and participate in

13th EASE Conference, Strasbourg, 16-19 June 2016

“Scientific integrity: editors on the front line” Herve Maisonneuve, past-president of EASE and local French organizer. You are welcome to send proposals


http://www.ease.org.uk/


Standardised Language Certificate for Medical Purposes (sTANDEM)


Health Tom Tom WorkshopOrganized by Istituto Superiore di Sanità, Italy and Hacettepe University, Turkey

ECIL - Instanbul 2013better use information, improve communicationshare knowledgedevelop life skills

to improve well-being

Show the benefits of a multisectorial approach Researchers & librarians working together to improve health information literacy

79Health Tom Tom Workshop • ECIL • Istanbul, October 22-25, 2013

Definition provided by WHO, 1999

HEALTH LITERACY represents the cognitive and social skills which determine the motivation and ability of individuals to:

Information literacy & public health

HEALTH LITERACY (information & communication) AS A MEANS FOR HEALTH PROMOTION

By improving people’s access to health information and their capacity to use it effectively, health literacy is critical to empowerment.

information• gain access to• understand • use

in ways which promote and maintain good health


MEDITERRANEAN EDITORS AND TRANSLATORS

translatorseditors, revisors and proofreadersproject managers authors’ editorsoral and writing coacheslanguage teachersinterpretersscientific and technical writerswriting instructorsresearchers

Thank youPaola De Castro

[email protected]

Questions?

De castro cerlis. Communicating science: rules, formats and best practices. Experience from a research institute for public health.

Education

advance sex gender reporting

community health workers

scientific contents

scientific writing

rare diseases

latin america

global level

peer review