STAKEHOLDERS WORKSHOP REPORT€¦ · This workshop was constructed to serve as an initial step for...

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EULAC PerMed - D2.3 “Workshop Report” 1 Disclaimer: Due to the situation of Covid-19 pandemic, this deliverable is pending formal validation of European Commission EULAC-PerMed has been funded by the European Union’s Horizon 2020 Research and Innovation Programme under Grant Agreement (GA) No 825173 Deliverable 2.3 STAKEHOLDERS WORKSHOP REPORT

Transcript of STAKEHOLDERS WORKSHOP REPORT€¦ · This workshop was constructed to serve as an initial step for...

Page 1: STAKEHOLDERS WORKSHOP REPORT€¦ · This workshop was constructed to serve as an initial step for building links with countries that are interested in collaborating in PM and joining

EULAC PerMed - D2.3 “Workshop Report” 1

Disclaimer: Due to the situation of Covid-19 pandemic, this deliverable is pending formal

validation of European Commission

EULAC-PerMed has been funded by the European Union’s

Horizon 2020 Research and Innovation Programme under

Grant Agreement (GA) No 825173

Deliverable 2.3

STAKEHOLDERS WORKSHOP REPORT

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EULAC PerMed - D2.3 “Workshop Report” 2

Project Acronym EULAC-PerMed

Project Title Widening EU-LAC policy and research cooperation in Personalised Medicine.

Grant Agreement no. 825173

Start date of the project

01/01/2019

End date of the project

31/12/2021

Work Package number

WP2 – MAPPING OF PERSONALISED MEDICINE INITIATIVES IN LAC REGION AND IDENTIFICATION OF GAPS AND NEEDS FOR BETTER FOSTERING INTEGRATION OF LAC COUNTRIES IN ICPerMed

Deliverable Number 2.3

Deliverable title “WORKSHOP REPORT”

Lead Beneficiary ANII

Due date M12 (Dec 2019)

Date of delivery M13 (Jan 2020)

Nature R (Report)

Dissemination level PU (Public)1

DISCLAIMER This document contains information which is the proprietary to the EU-LAC Consortium. Neither this document nor the information contained herein shall be used, duplicated or communicated by any means to any third party, in whole or in parts, except with prior written consent of the EU-LAC Coordinator. The information in this document is provided "as is", and no guarantee or warranty is given that the information is fit for any particular purpose. The document reflects only the authors’ view. The EU-LAC is not responsible for any use that may be made of the information it contains. The user uses the information at its solo risk and liability

Version Contributors Comments

1.0 ANII 1st draft

1.1 ANII and INNOVATEC 1st draft reviewed

1.2 ANII, INNOVATEC and CSO-MOH 1st draft reviewed

1.3 ANII, INNOVATEC, CSP-MOH, ISCIII Final version

1 The annexes no. II, III and IV of the report will not be included in the public edition for DP issues.

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Deliverable 2.3

“WORKSHOP REPORT”

Contents

Page

1. INTRODUCTION AND OBJECTIVES OF THE WORKSHOP 4

2. CONTENT OF THE WORKSHOP 4

2.1 WELCOME AND OPENING 5

2.2 KEYNOTE AND INVITED PRESENTATIONS 5

2.3 THEMATIC BLOCKS AND WORKING GROUPS 6

2.3.1 The situation of Personalised Medicine in Latin America and the Caribbean

6

2.3.2 Challenges and future perspectives of PM in Latin America and the Caribbean

7

2.3.3 Strengthening the EU-LAC collaboration in Personalised Medicine

8

3. PARTICIPANTS AND SPEAKERS 8

4. CONCLUDING REMARKS 11

ANNEX I - Agenda of the workshop 16

ANNEX II - List of participants 24

ANNEX III - Working groups 32

ANNEX IV - Gallery 37

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1. INTRODUCTION AND OBJECTIVES OF THE WORKSHOP

As part of the EULAC-PerMed project, a workshop intended for promoting the development

and broadening of EU-LAC policy and research cooperation in Personalised Medicine (PM),

took place during the 11th and 12th of December, in the city of Montevideo (Uruguay).

This workshop was constructed to serve as an initial step for building links with countries that

are interested in collaborating in PM and joining the ICPerMed initiative. With that purpose in

mind, we sought to gather LAC and EU actors from different stakeholder groups: Health

Policymakers & Funding Agencies, R&I Policymakers & Funding Agencies,

regional/international organizations active in health research and policy, universities and

research organizations, hospitals, scientific associations and networks, researchers, Public-

Private partnerships, Industry and Patient Associations and other civil organizations.

The workshop brought together EULAC-PerMed partners, representatives of ICPerMed,

European and LAC experts and the aforementioned stakeholders in order to share knowledge,

discuss options and provide recommendations towards building bridges in PM between Latin

America, the Caribbean and Europe.

The main objectives of the workshop were the following:

To present the work of the EULAC-PerMed project, concentrating on the results of the

mapping of PM in LAC.

To analyse and discuss with relevant actors from LAC the situation of PM in Latin

America and the Caribbean, while analyzing the main gaps and barriers, opportunities

and challenges ahead.

To discuss the best options to promote the collaboration between LAC and EU in PM

and how to best approach the science and policy dialogue to be carried out within the

EULAC-PerMed project.

The Workshop was carried out in the facilities of the LATU Technological Park (Avenida Italia

6201, Montevideo, Uruguay) and the organization was under the responsibility of INNOVATEC

and the National Research and Innovation Agency of Uruguay (ANII)

It is worth mentioning that the contents and speakers for the workshop were proposed by

INNOVATEC while the logistics aspects were arranged by ANII.

2. CONTENT OF THE WORKSHOP

In order to provide a general view of the content and activities that were offered during the

workshop, we present in this section of the report highlights from every session.

As it was mentioned before, the workshop was carried out during December 11th and 12th,

having a total duration of one and a half days (see Annex I – Workshop agenda).

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In order to better achieve the above mentioned objectives, the Workshop was structured as

follows:

Welcome and opening session

Two keynote presentations

Five invited presentations

Three thematic blocks, of which two included work in groups:

o The situation of PM in Latin America and the Caribbean

o Challenges and future perspectives of PM in Latin America and the Caribbean

o Strengthening the EU-LAC collaboration in PM.

2.1 WELCOME AND OPENING

The opening of the workshop took place on December 11th, in the presence of the Minister of

Health of Uruguay, Dr. Jorge Basso, the President of the National Research and Innovation

Agency of Uruguay (ANII), Eng. Fernando Brum and the Coordinator of EULAC PerMed Project,

Dr. Esther Rodríguez. They offered welcome words to the participants and the representatives

of Uruguay made a short speech on the importance of PM for the Health system as well as for

the development of research and innovation.

Following the opening session, there was a brief introduction to the objectives of the

workshop and to the participants. This was conducted by Joaquin Guinea from INNOVATEC.

The brief introduction was followed by a presentation of the EULAC PerMed Project by Esther

Rodríguez from ISCIII.

2.2 KEYNOTE AND INVITED PRESENTATIONS

The two keynote presentations, which took place on the first day of the Workshop, aimed at

making an introduction to the situation of PM in Europe and Latin America. The presentations

were the following:

KEYNOTE PRESENTATION 1: “THE GENOMIC INITIATIVE OF THE SPANISH SENATE AND ITS

ROLE IN PROMOTING THE NATIONAL STRATEGY OF PRECISION MEDICINE IN SPAIN”

Dr. José Martínez Olmos. Escuela Andaluza de Salud Pública. Ex - Senador y ex Portavoz de

la Comisión de Sanidad y Servicios Sociales.

KEYNOTE PRESENTATION 2: “A (personal) VISION OF PERSONALISED MEDICINE FROM

LATIN AMERICA AND CARIBBEAN”

Dr. Manoel Barral-Netto. FIOCRUZ (Brazil)

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The invited presentations took place on the second day of the workshop and were intended to

introduce some specific experiences in the development and support of PM in the EU and in

LAC countries.

The presentations were the following:

“THE ICPerMed INTERNATIONAL CONSORTIUM FOR PERSONALISED MEDICINE“

Dra. Ulrike Busshoff, ICPerMed Secretariat, DLR (Germany).

“CNPq ACTIVITIES IN PERSONALISED MEDICINE”

Professor João Azevedo, President of CNPq, National Council for Scientific and

Technological Development (Brazil)

“CELAC AND EUROPEAN CONSORTIUM FOR A PERSONALISED MEDICINE APPROACH TO

GASTRIC CANCER (LEGACy)”

Dra. Tania Fleitas Kanonnikoff- INCLIVA (Spain). Project Coordinator.

“PERSPECTIVES AND CHALLENGES FOR HUMAN BIOLOGICAL MATERIAL BIOBANKS IN THE

ADVANCE OF PERSONALISED MEDICINE: EXPERIENCE FROM THE LATIN AMERICA AND THE

CARIBBEAN BIOBANKS NETWORK (REBLAC)”

Dr. Gustavo Stefanoff. Coordinator of the Latin America and the Caribbean Network of

Biobanks (REBLAC). National Institute of Cancer José Alencar Gomes da Silva (INCA),

(Brazil)

“ERA-PerMed, ERA-NET ON PERSONALISED MEDICINE”

Dra. Esther Rodriguez, ISCIII (España)

2.3 THEMATIC BLOCKS AND WORKING GROUPS

In order to make an in-depth analysis of the situation in both EU and LAC countries regarding

the development of PM, which can provide valuable outputs for the objectives of the project,

the following three thematic blocks were established:

The situation of PM in Latin America and the Caribbean

Challenges and future perspectives of PM in Latin America and the Caribbean

Strengthening the EU-LAC collaboration in PM

2.3.1 Situation of PM in Latin America and the Caribbean

This thematic block started with the presentation of the results of the study “Mapping of

personalised medicine in LAC countries”, which is part of the project and was conducted by -

INNOVATEC (Spain) and Instituto GORGAS (Panamá).

After the presentation of the study, a roundtable discussion took place, where some relevant

experiences in PM from eight LAC countries were presented.

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The roundtable was composed as follows:

MEXICO: "The research in the National Institutes of Health towards Personalised

Medicine”

Dr. Rodolfo Cano Jiménez. Director of Health Research. Secretary of Health

BRAZIL: “The brazilian initiative in Precision Medicine BIPMed”.

Dr. Iscia Lopes-Cendes. Universidade Estadual de Campinas (UNICAMP). Faculdade de

Ciências Médicas (FCM).

CUBA: “The National Program in Precision Medicine”.

Dra. María Victoria Norabuena Canal, Chief of the Department of Research of the Direction

of Science, Technology and Innovation. Ministry of Public Health

CHILE: "Implementation of precision oncology: from research to clinical practice”

Dr. Ricardo Armisén, Chief Scientist. Center of Excellence in Precision Medicine (CEMP).

PERÚ: “Experience in studies of Precision Medicine: University of San Martin de Porres”

Dr. Liliana Vásquez, Principal Investigator, Center of Precision Medicine of the Faculty of

Medicine – University of San Martin de Porres.

COLOMBIA: “Closing gaps in Precision Medicine in Colombia: GenomaCES Biotechnologies”

Dr. Juan Esteban Gallo, Founder and Chief Scientist.

ARGENTINA: “Argentinian Initiatives in Precision Medicine”

Licc. Azul Irazoqui and Licc. Agustina Vello. Secretary of Science, Technology and

Productive Innovation of the Nation, Government of Argentina.

URUGUAY: “Opportunities for the development of predictive medicine in oncology.

Research and clinical practice”

Dr. Mauricio Cuello. Associated Professor of the Service of Oncology of the Manuel

Quintela Hospital. Vice-Director of the National Cancer Institute of Uruguay.

2.3.2 Challenges and future perspectives of PM in Latin America and the Caribbean

This block started with the presentation of two studies related to the theme to be addressed,

which were intended to serve as a kick-start for the later work done in groups. The results of

the following studies were presented:

“HEALTH INNOVATION POLICIES IN LATIN AMERICA AND ITS ROLE AS DRIVERS OF

PERSONALISED MEDICINE. PRESENTATION FROM THE RIMAIS STUDY”

Dr. Tomás López-Peña. ISCIII (España)/RIMAIS

“RESULTS OF THE SURVEY CHALLENGES AND PERSPECTIVES OF PERSONALISED

MEDICINE IN LATIN AMERICA AND THE CARIBBEAN”

Dr. Juan Miguel Pascale and Dr. Franz F. Castro, Instituto GORGAS (Panamá).

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After these two presentations, the audience was divided into four working groups and each

one of them had an assigned moderator and a rapporteur (representatives of partner

institutions of the EULAC PerMed project). The people assigned to each working group were

determined previously, in order to ensure balance in terms of representation of the different

stakeholders groups and also a balanced geographical distribution. The groups were of around

18-20 persons each.

Once the discussion phase was finished, a plenary session, in which every group presented

their results and a summary of the main findings that emerged, took place.

2.3.3 Strengthening the EU-LAC collaboration in personalised medicine

This thematic block started with a presentation entitled “SCIENCE & POLICY DIALOGUE

BETWEEN LAC COUNTRIES AND ICPERMED. NEXT STEPS”, which was carried out by Laura De La

Cruz from DLR (Germany)

After the presentation, the same four working groups that were assigned for 2.3.2 (including

their respective Moderator and Rapporteur) started a discussion on how to strengthen the

collaboration between EU and LAC countries in order to foster the development of PM in both

regions. Once the discussion was finished, each group shared their conclusions.

3. PARTICIPANTS AND SPEAKERS

At the closing date of the application submission to participate in the workshop, 87

applications were received. All of the applicants were admitted. Finally, a total of 73

participants effectively attended the activities (see Annex II).

Below is shown a table which indicates the composition of the audience and the speakers that

participated in the Workshop taking into consideration the region where they come from and

the stakeholder group to which they belong.

PARTICIPANTS

Stakeholder group N° of participants

EU LAC Others*

Health Policy Makers 2 14 -

Funding Agencies - 1 -

R&I Policy Makers & Funding Agencies - 9 -

Regional/international organizations active in health research and policy

- - 2

Universities and research organizations 10 22 -

Hospitals 1 3 -

Scientific associations and networks - 3 -

Public-Private partnerships - - -

Business/ Industry 2 4 -

Patient Associations - - -

Other Civil organizations - - -

TOTAL 15 56 2

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*There were also participants from USA

Chart 1. Participants by geographical region

Chart 2. Participants by stakeholders group

Health Policy Makers

Funding Agencies

R&I Policy Makers &Funding Agencies

Universities and researchorganizations

Hospitals

Scientific associations andnetworks

Business/ Industry

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SPEAKERS

Stakeholder group N° of speakers

EU LAC

Health Policy Makers 1 2

Funding Agencies - 1

R&I Policy Makers & Funding Agencies - -

Regional/international organizations active in health research and policy

1 -

Universities and research organizations 3 4

Hospitals - -

Scientific associations and networks - 1

Public-Private partnerships - -

Business/ Industry - 1

Patient Associations - -

Other Civil organizations - -

TOTAL 5 9

Chart 3. Speakers by geographical region.

EU

LAC

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Chart 4. Speakers by stakeholders group

4. CONCLUDING REMARKS

The workshop was successful in terms of achieving a significant participation of

representatives of the different stakeholders groups considered from both EU and LAC regions.

Moreover, very valuable contributions were collected from the participants and the speakers,

which constitute inputs for the analysis of the three aspects treated during the activity: actual

situation, challenges and future perspectives, and how to strengthen the collaboration

between EU and LAC countries for the development of PM. All those contributions were

properly recorded and are part of the Deliverable 2.22, where they are presented in detail.

Here we present a summary of the main conclusions regarding each of the issues that were

analyzed:

Challenges and future perspectives of PM in Latin America and the Caribbean

As presented in Deliverable 2.2, several main challenges were pointed out by the groups. They

can be addressed to the following categories:

1) Scientific and technological

2) Operational

3) Economic

4) Governance

2 EULAC-PerMed project. Deliverable D2.2: ANALYSIS OF STRENGTHS, WEAKNESSES, BARRIERS

AND GAPS FOR ICPerMed-LAC COOPERATION. Available at http://www.eulac-permed.eu/

Health Policy Makers

Funding Agencies

Regional/internationalorganizations active inhealth research and policyUniversities and researchorganizations

Scientific associations andnetworks

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1) Scientific and technological challenges

To assume and understand the existing diversity in the LAC region

Challenge more on the implementation side, and not in the scientific and technological

capacity of the region.

Being able to engage professionals from different disciplines to work together and

participate in PM clinical trials

To have a more in-depth knowledge of the genetic diversity of the different LAC

populations, together with epidemiological data of the countries. There are not many

genomic databases available in LAC, and without this, it is very difficult to advance in

the development of PM.

Establish mechanisms and regulations that facilitate the use of PM data for

researchers participating in international R&D projects.

Facilitate data interoperability.

2) Operational challenges (integrating PM into healthcare and clinical practice)

Guaranteeing access to PM drugs when investing in population genetic analyses and

PM clinical trials

Training and capacity building on genomic analysis for health care professionals

Better inform health policy and decision makers on the importance of PM

implementation in terms of cost reduction for the health systems.

Countries have to develop realistic PM strategies, taking into account the country

context and the type of diseases.

Adapt already existing PM standards

3) Economic

Lack of information about the most cost-effective technologies and infrastructure for

PM. Europe could support LAC countries in knowing and deciding what are the best

options when investing in expensive equipment.

Poor planning when acquiring innovative technologies (i.e. expensive and costly

equipment are bought and there are no qualified personnel available to use them)

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4) Governance

Establish long term healthcare policies that are not affected by political changes in the

country, and that take into account the need to invest in health research.

Include PM in the health policy agenda.

The healthcare systems always suffer expense cuts at times of economic deceleration

periods.

It is worth mentioning that besides this, a SWOT analysis was performed for each group. The

results are presented in Deliverable 2.2.

Strengthening the EU-LAC collaboration in PM

The main conclusions on this regard, as presented in Deliverable 2.2, are the ones summarized

below:

EU-LAC collaboration needs to be strengthened. It was also noted that there is a need

to strengthen the collaboration between LAC countries.

Collaboration with Europe should be horizontal, not top-down approaches, based on

equal partnerships and mutual benefits between the two regions.

Before collaborating with Europe, there is a need to have a common understanding in

the region of what PM is, knowing what resources are available in the region, and

making sure that decision makers have an understanding of PM. For this, it is

important to rely on already existing networks such as RIMAIS, COMISCA or seek the

collaboration of international organizations such as OPS/PAHO, to start introducing the

discussion of PM in the health policy agendas of the region.

Collaboration at both the scientific and political levels was found important and should

run in parallel. Since the research/academic sector is already “convinced” about PM,

the focus should be slightly shifted towards the political/policy level. It is important to

raise awareness among them about the potential benefits of PM. In this regard,

disseminating the benefits of PM in an understandable language for policy makers and

the general public is necessary.

Implementation of PM in the region should follow a stepwise approach, and each

country will advance based on its own circumstances and the level of development of

its health system. However, it is crucial to learn from other countries and regions in

terms of stories of success, errors, experiences and benefits.

For those countries which still do not have any developments in PM (i.e. Honduras,

Paraguay), it is important to first know what the situation in the country is, map

human resources and infrastructure available, and improve intra-regional

collaboration.

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Regarding the areas in which the EU-LAC cooperation in pm could be beneficial, the following were identified as the more relevant ones:

Training for researchers and for healthcare professionals

Exchange of practices and experiences of PM implementation in health systems

Collaborative research Projects

Implementation of joint research programs (i.e. ERA-PerMed).

Besides the aforementioned general areas for collaboration, LAC participants in the workshop pointed out additional and more specific issues in which collaboration could be beneficial for LAC countries:

Learn how to carry out the evaluation of PM treatments and diagnostic tools within the process of health technology assessment, sharing experiences through cooperative research.

Learn on the implementation of programs and analysis of cost-effectiveness, how to develop protocol for the evaluation of new technologies. Adequate role of HTA expertise in evaluation of research projects.

Emulating examples of funding schemes, engagement of institutions and project management.

Implementation research with a focus on scaling up interventions and PM approaches.

Find innovative ways to measure impact, in order to demonstrate PM’s long-term benefits

Create innovative operative frameworks, mechanisms for resource allocation among different working packages, and creating indicators, under a single umbrella. This is not the same as HTA, not for a single technology, but for categories of subpopulations, diseases. Endpoints are not clear.

Regarding how to facilitate and strengthen the collaboration between Europe and LAC in PM and in how the EULAC PerMed project can contribute to this goal, three main aspects were pointed out:

Research

Capacity building

Networking

Examples of possible actions in each one of these aspects are presented in Deliverable 2.2.

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Regarding which would be the best or most efficient approach to better achieve the EULAC

PerMed objective of integrating LAC countries in ICPerMed, the following approaches were

identified:

In a first step, there is a need to convince the governments.

Articulating what the rationale is and what the incentives are for each country in order

to collaborate with the EU in PM.

Health diplomacy.

International responsibility.

Finding champions for the project in the LAC region.

Build trust by very open and transparent communication on the rationale behind the

EU engagement. Transparency and communication: making it clear that there are no

economic interests underneath.

Scientific reasoning (critical mass in terms of population and most comparable to EU

population, common diseases including rare diseases), market access and volume.

…………………………………………………………………..

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ANNEX I

Agenda of the Workshop

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EULAC-PerMed: AMPLIANDO LA COOPERACIÓN POLÍTICA Y DE

INVESTIGACIÓN EN MEDICINA PERSONALIZADA ENTRE EUROPA

Y LATINO-AMÉRICA Y CARIBE

EULAC-PerMed: WIDENING EU-LAC POLICY AND RESEARCH

COOPERATION IN PERSONALISED MEDICINE

TALLER DE TRABAJO/WORKSHOP:

CONSTRUYENDO PUENTES EN MEDICINA PERSONALIZADA ENTRE AMÉRICA LATINA-CARIBE Y EUROPA/ BUILDING BRIDGES IN PERSONALISED MEDICINE BETWEEN LATIN

AMERICA-CARIBBEAN AND EUROPE

11-12 diciembre, 2019.

Parque Tecnológico LATU, Montevideo (URUGUAY)

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EULAC-PerMed

El proyecto europeo EULAC-PerMed3, tiene como objetivo final Integrar a los países de

Latinoamérica y Caribe (LAC) en el consorcio y actividades de ICPerMEd4, como un medio para

ampliar el alcance internacional de las políticas de I+D relacionadas con la Medicina

Personalizada (MP), promoviendo y favoreciendo un enfoque global para la implementación

de la MP a lo largo de toda la cadena de valor del sector salud.

El proyecto también trabajará para facilitar una medicina personalizada que beneficie a los

pacientes, los ciudadanos y la sociedad en general, con el objetivo final de contribuir al

Objetivo de Desarrollo Sostenible nº 3 de Naciones Unidas “Garantizar una vida sana y

promover el bienestar para todos en todas las edades”.

OBJETIVOS DEL TALLER

Presentar el proyecto EULAC-PerMed y los primeros resultados del estudio sobre

medicina personalizada en Latinoamérica y el Caribe (LAC) realizados en marco del

proyecto.

Analizar y debatir sobre la situación de la Medicina Personalizada en LAC, principales

barreras, retos y oportunidades.

Analizar las diferentes oportunidades de colaboración entre LAC y Europa en el campo

de la Medicina Personalizada y cómo afrontar el dialogo político y científico previsto

en el marco del proyecto EULAC-PerMed.

El taller servirá como punto de encuentro de los integrantes del proyecto EULAC-PerMed y

representantes del consorcio internacional ICPerMed con expertos europeos y latino-

americanos, representantes de Ministerios de Salud, Ministerios de Ciencia y tecnología,

agencias de financiación de la I+D, centros de investigación, industria y asociaciones de

pacientes de LAC para compartir experiencias, analizar opciones de colaboración y proponer

recomendaciones para una mejor y más fructífera colaboraciones entre las dos regiones en

este campo.

ORGANIZACIÓN

INNOVATEC – España

Agencia Nacional de Investigación e Innovación – ANII – URUGUAY

El taller ser enmarca dentro de las actividades del proyecto europeo EULAC-PerMed,

financiado por la Comisión Europea a través del Programa Marco Horizonte 2020.

El idioma del taller será el español, con traducción simultánea al inglés.

3 http://www.eulac-permed.eu/ 4 El Consorcio Internacional de Medicina Personalizad (ICPerMed) persigue abordar de manera coordinada la investigación y la implementación de la medicina personalizada. https://www.icpermed.eu

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EULAC-PerMed

The European project EULAC-PerMed 5has as final aim to integrate countries from the Latin

American and Caribbean (LAC) region into ICPerMed6 and its activities, as a means to widen

the international scope of Personalised Medicine (PM) R&I related policies, increasing and

encouraging a worldwide implementation of PM approaches across the whole healthcare

value chain. The project will also work towards facilitating the introduction of PM for the

benefit of patients, citizens and society, with the ultimate goal of contributing to the UN

Sustainable Development Goal nº 3, that is to “ensure healthy lives and promote well-being for

all at all ages”,

OBJECTIVES OF THE WORKSHOP

To present the work of the EULAC-PerMed project, mainly the results of the mapping

of Personalised Medicine in LAC.

To analyse and discuss with relevant actors from LAC the situation of Personalised

Medicine in Latin America and the Caribbean, analyzing main gaps and barriers,

opportunities and challenges ahead.

To discuss the best options to promote the collaboration between LAC and EU in

Personalised Medicine and how to best approach the science and policy dialogue to be

carried out within the EULAC-PerMed project.

The workshop brings together EULAC-PerMed partners, representatives of ICPerMed,

European and LAC experts, policy makers, funders, researchers and private business to share

knowledge, discuss options and provide recommendations towards building bridges in

personalised medicine between Latin America, the Caribbean and Europe.

ORGANIZERS

INNOVATEC – España

Agencia Nacional de Investigación e Innovación – ANII – URUGUAY

The workshop is one of the activities carried out as part of the European project EULAC-

PerMed funded by the European Commission’s Horizon 2020 Research and Innovation

programme under Grant Agreement Num. 825173.

The main language of the workshop will be Spanish, and simultaneous translation to English

will be available.

5http://www.eulac-permed.eu/ 6 The International Consortium for Personalised Medicine (ICPerMed) was initiated during several workshops organised by the European Commission throughout 2016. ICPerMed aims to provide a flexible framework for cooperation between its member organisations. https://www.icpermed.eu/

DIA 1: MIÉRCOLES 11 DICIEMBRE 2019 /DAY 1 WEDNESDAY 11TH DECEMBER 2019

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Hora/Hour

09:00-09:15 REGISTRO DE PARTICIPANTES /REGISTRATION

09:15-09:30

BIENVENIDA E INAUGURACIÓN DEL TALLER/WELCOME AND OPENING OF THE WORKSHOP

Dra. Esther Rodríguez. Coordinadora de la Oficina de proyectos europeos. Coordinadora de EULAC-PerMed. Instituto de Salud Carlos IIII, España.

Dr. Jorge Basso- Ministro de Salud Pública de Uruguay.

Ing. Fernando Brum. Presidente del Directorio de ANII Agencia Nacional de Investigación e Innovación. Uruguay.

09:.30-09:35

BREVE INTRODUCCIÓN DE LOS OBJETIVOS DEL TALLER Y LOS PARTICIPANTES /BRIEF INTRODUCTION OF THE WORKSHOP AND THE PARTICIPANTS

Joaquín Guinea/ Erika Sela INNOVATEC.

09:35-09:50 PRESENTACIÓN DEL PROYECTO EULAC-PerMed / The EULAC-PerMed PROJECT

Dra. Esther Rodriguez, ISCIII (España).

09:50-10:10

PRESENTACIÓN 1: LA PONENCIA DEL ESTUDIO SOBRE GENÓMICA DEL SENADO ESPAÑOL Y SU PAPEL PARA IMPULSAR LA ESTRATEGIA NACIONAL DE MEDICINA DE PRECISIÓN EN ESPAÑA. / KEYNOTE PRESENTATION 1: THE GENOMIC INITIATIVE OF THE SPANISH SENATE AND ITS ROLE IN PROMOTING THE NATIONAL STRATEGY OF PRECISION MEDICINE IN SPAIN. Dr. José Martínez Olmos. Escuela Andaluza de Salud Pública. Ex-senador y ex Portavoz de la Comisión de Sanidad y Servicios Sociales.

10:10 –10:30

PRESENTACIÓN 2: UNA VISIÓN DE LA MEDICINA PERSONALIZADA DESDE AMÉRICA LATINA / KEYNOTE PRESENTATION 2: A VISION OF PERSONALISED MEDICINE FROM LATIN AMERICA AND CARIBBEAN. Dr. Manoel Barral-Netto. FIOCRUZ (Brasil)

10:30-11:00 CAFÉ /COFEE BREAK

LA SITUACIÓN DE LA MEDICINA PERSONALIZADA EN AMERICA LATINA Y EL CARIBE THE SITUATION OF PERSONALISED MEDICINE IN LATIN AMERICA AND THE CARIBBEAN.

11:00-11:20

PRESENTACIÓN DE LOS RESULTADOS DEL ESTUDIO SOBRE MEDICINA PERSONALIZADA EN PAÍSES DE AMÉRICA LATINA Y EL CARIBE/ PRESENTATION OF THE RESULTS OF THE STUDY “MAPPING OF PERSONALISED MEDICINE IN LAC COUNTRIES”. Joaquín Guinea/ Erika Sela, INNOVATEC (España) Dr. Franz F. Castro, Instituto GORGAS (Panamá).

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11.20-13:00

MESA REDONDA. APRENDIENDO DE DIFERENTES INICIATIVAS DE MP EN PAÍSES DE AMÉRICA LATINA / LEARNING ABOUT PM INITIATIVES IN LATIN AMERICA.

Moderador: Erika Sela, INNOVATEC

MEXICO: "La investigación en los Institutos Nacionales de Salud hacia la Medicina Personalizada" Dr. Rodolfo Cano Jiménez. Director de Investigación en Salud. Secretaria de Salud.

BRAZIL: “La Iniciativa brasileña de Medicina de Precisión BIPMed”. Dra. Iscia Lopes Cendes. Universidade Estadual de Campinas (UNICAMP). Faculdade de Ciências Médicas (FCM).

CUBA: “El Programa Nacional de Medicina de Precisión”. Dra. María Victoria Norabuena Canal, Jefa del Departamento de Investigaciones de la Dirección de Ciencia Tecnología e Innovación. Ministerio de Salud Pública

CHILE: "Implementación de la oncología de precisión: de la investigación a la práctica clínica". Dr. Ricardo Armisén, Director Científico. Centro de Excelencia en Medicina de Precisión (CEMP).

PERÚ: “Experiencia de estudios de Medicina de Precisión: Universidad San Martin de Porres” Dra. Liliana Vásquez, Investigador principal, Centro de Medicina de Precisión de la Facultad de Medicina - Universidad de San Martin de Porres.

COLOMBIA: Cerrando brechas de la medicina de precisión en Colombia: GenomaCES Biotechnologies. Dr. Juan Esteban Gallo, fundador y director científico.

ARGENTINA: “Iniciativas argentinas en medicina de precisión”. Licc. Azul Irazoqui y Licc Agustina Vello. Secretaría de Ciencia, Tecnología e Innovación Productiva de la Nación, Gobierno de Argentina.

URUGUAY. Oportunidades para el desarrollo de la medicina predictiva en oncologia. Investigación y práctica clínica. Dr. Mauricio Cuello. Profesor asociado del Servicio de oncología, Hospital Manuel Quintela. Subdirector del Instituto Nacional del Cáncer de Uruguay.

13:00-13:30 PREGUNTAS Y DEBATE / QUESTIONS AND DISCUSSION

13:30-14:30 ALMUERZO /LUNCH

RETOS Y PERSPECTIVAS DE FUTURO PARA LA MEDICINA PERSONALIZAD EN AMÉRICA LATINA Y EL CARIBE. CHALLENGES AND FUTURE PERSPECTIVES OF PERSONALISED MEDICINE IN LATIN AMERICA AND THE

CARIBBEAN Moderador: Joaquín Guinea (INNOVATEC)

14:30-14:45

LAS POLÍTICAS DE INNOVACIÓN EN SALUD EN AMÉRICA LATINA Y SU PAPEL EN EL DESARROLLO

DE LA MEDICINA PERSONALIZADA. RESULTADOS DEL ESTUDIO DE RIMAIS/ HEALTH

INNOVATION POLICIES IN LATIN AMERICA AND ITS ROLE AS DRIVERS OF PERSONALISED

MEDICINE. PRESENTATION FROM THE RIMAIS STUDY

Dr. Tomás López-Peña. ISCIII (España)/RIMAIS

14:45-15:00

RESULTADOS DE LA ENCUESTA SOBRE RETOS Y FUTURO DE LA MP EN LAC/RESULTS OF THE

SURVEY CHALLENGES AND PERSPECTIVES OF PERSONALISED MEDICINE IN LATIN AMERICA AND

THE CARIBBEAN

Dr. Juan Miguel Pascale/Dr. Franz F. Castro, Instituto GORGAS (Panamá).

15:00-16:30 RETOS Y FUTURO DE LA MP EN LAC. SESIONES DE TRABAJO PARALELAS EN 4 GRUPOS DE

TRABAJO/ CHALLENGES AND FUTURE OF PM IN LAC. DISCUSSION IN 4 WORKING GROUPS

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EULAC PerMed - D2.3 “Workshop Report” 22

GRUPO 1:

Moderador: Paula

García (ECRIN)

Rapporteur: María

Gamboa (ISCIII)

GRUPO 2:

Moderador: Juan

Miguel Pascale

(GORGAS)

Rapporteur Erika Sela

(INNOVATEC)

GRUPO 3:

Moderador: Joaquín

Guinea (INNOVATEC)

Rapporteur Manoel

Barral (FIOCRUZ)

GRUPO 4:

Moderador: Ulrike

Busholff (DLR)

Rapporteur: Franz

Castro (GORGAS)

(English speaking)

16:30-17-00 CAFÉ /COFEE

17:00-17:30

SESIÓN PLENARIA: PRESENTACIÓN DE LOS RESULTADOS DE LOS DIFERENTES GRUPOS.

/PLENARY SESSION: PRESENTATION OF THE RESULTS OF THE GROUP DISCUSSION AND

SUMMARY OF MAIN FINDINGS.

Moderador: Dr. Juan Miguel Pascale/ Dr. Franz F. Castro, Instituto GORGAS (Panamá).

17:30 CLAUSURA DEL DÍA /CLOSING OF THE DAY

19:30 - 22:00 EVENTO SOCIAL /SOCIAL EVENT CENA -DINNER

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DIA 2: JUEVES, 12 DICIEMBRE 2019 / DAY 2: THURSDAY, 12TH DECEMBER 2019

HORA/HOUR

09:00-9:10 APERTURA DEL TALLER E INTRODUCCIÓN DE LA AGENDA DEL DÍA/ OPENING OF THE WORKSHOP AND INTRODUCTION OF THE DAY AGENDA

PRESENTACIONES INVITADAS /INVITED PRESENTATIONS

09:10- 10:45

THE ICPerMed INTERNATIONAL CONSORTIUM FOR PERSONALISED MEDICINE. Dra. Ulrike Busshoff, ICPerMed secretariat, DLR (Germany).

CNPq ACTIVITIES IN PERSONALISED MEDICINE. Professor João Azevedo, President of CNPq, National Council for Scientific and Technological Development (Brazil)

CELAC AND EUROPEAN CONSORTIUM FOR A PERSONALISED MEDICINE APPROACH TO GASTRIC CANCER (LEGACy). Dra. Tania Fleitas Kanonnikoff- INCLIVA (España). Coordinadora del Proyecto.

PERSPECTIVAS Y DESAFÍOS DE LOS BIOBANCOS DE MATERIAL BIOLÓGICO HUMANO EN EL AVANCE DE LA MEDICINA PERSONALIZADA: EXPERIENCIA DE LA RED DE BIOBANCOS DE LATINOAMÉRICA Y DEL CARIBE (REBLAC). Dr. Gustavo Stefanoff. Coordinador de la Red de Biobancos de Latinoamérica y del Caribe (REBLAC). Instituto Nacional de Câncer José Alencar Gomes da Silva (INCA), (Brasil)

ERA-PerMED, ERA-NET ON PERSONALISED MEDICINE Dra. Esther Rodriguez, ISCIII (España)

10:45-11:15 CAFÉ /COFEE

FORTALECIENDO LA COLABORACIÓN ENTRE EUROPA Y AMERICA-LATINA Y CARIBE EN MEDICINA PERSONALIZADA / STRENGTHENING THE EU-LAC COLABORATION IN PERSONALISED MEDICINE

Moderadores: María José Ruíz Álvarez (Ministerio Salud, Italia) /Manoel Barral (FIOCRUZ, Brasil)

11:15-11:35 SCIENCE & POLICY DIALOGUE BETWEEN LAC COUNTRIES AND ICPERMED. NEXT STEPS.

Laura de la Cruz - DLR (Alemania)

11:35-13:00

COMO FORTALECER LA COLABORACIÓN EU-LAC EN MEDICINA PERSONALIZADA/ HOW TO STRENGTHEN THE COLLABORATION BETWEEN LAC AND EU COUNTRIES IN PERSONALISED MEDICINE) Introducción a las sesiones en grupo / Introduction to the working group session. Joaquín Guinea INNOVATEC /Franz Castro (Instituto GORGAS)

GRUPO 1:

Moderador: Paula

García (ECRIN)

Rapporteur: María Gamboa (ISCIII)

GRUPO 2:

Moderador: Juan

Miguel Pascale

(GORGAS)

Rapporteur Erika Sela

(INNOVATEC)

GRUPO 3:

Moderador: Joaquín

Guinea (INNOVATEC)

Rapporteur Manoel Barral (FIOCRUZ)

GRUPO 4:

Moderador: Ulrike

Busshoff, (DLR)

Rapporteur: Franz Castro (GORGAS) (English Speaking)

13:00-13:30

PRESENTACIÓN DE LOS RESULTADOS DE LOS GRUPOS Y PRINCIPALES RECOMENDACIONES PARA FORTALECER LA COLABORACIÓN EU-LAC EN MP / PRESENTATIONS OF RESULTS FROM THE DISCUSSION GROUPS TO THE AUDIENCE BY THE RAPPORTEURS Moderadores: María José Ruíz Álvarez (Ministerio Salud, Italia) /Manoel Barral (FIOCRUZ, Brasil)

13:30

CONCLUSIONES Y CLAUSURA DEL TALLER / WRAP UP AND CLOSING

Joaquin Guinea (Innovatec, España)

Esther Rodriguez (ISCIII, España)

13:30-14:30 ALMUERZO /LUNCH