9/10: FOKUS Patient® – Person Centered Care

Person centered care is a concept that has been established for a long time, but is interpreted and experienced different depending on where in the the patient journey you are, and what kind of function or position you have.

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REGISTRATION

PROGRAM – will be updated with more speakers

For more information about each speaker, click on their name.

TIME	MEETING ROOMS	ACTIVITIES – SEMINARS – SPEAKERS
09:00		REGISTRATION OPENS Welcome to visit our exhibitors
09:30	Hörsalen The Auditorium	WELCOME – FOKUS Patient® EVENT – Penilla Gunther, Founder FOKUS Patient® and Mattias Hellström, Co-founder FOKUS Patient®.
09:35	Hörsalen (in English)	PATIENTS NEED PERSON CENTERED CARE, HOW CAN THAT BE POSSIBLE INDEPENDENT OF METHODS? – Dr Neda Milevska Kostova, President of IAPO – International Alliance of Patient Organisations , Switzerland. Postdoctoral Researcher – Antimicrobial Stewardship in resource-limited settings, The Netherlands. President of the Centre for Regional Policy Research and Cooperation “Studiorum“ (CRPRC) – a think-tank for the Republic of Macedonia.
09:50	Hörsalen (in English)	HOW DO WE MEASURE THE OUTCOMES AND EXPERIENCES OF HEALTHCARE THAT MATTER MOST TO PEOPLE? – Frederico Guanais, Deputy Head, Health Division at OECD, France. PaRIS is the OECD’s Patient-Reported Indicator Surveys initiative where countries work together on developing, standardising and implementing a new generation of indicators.
10:20		BREAK
10:25 parallell seminars	Hela världen (in Swedish)	HOW CAN PERSON CENTERED CARE BEST BE CLOSE TO THE INDIVIDUAL? How can healthcare better plan and act for promoting health activities and a cohesive care for people with the biggest needs – people with multimorbidity, chronic conditions and more extensive disabilities? Is the use of more digitalized tools the solution, with or without the professionals in healthcare? ”How can digitalization help healthcare to be more person-centered?” – Jesper Olsson, Manager digitalization in healthcare, Swedish Medtech, Ph D Medical Management, innovation and improvement knowledge, Sweden ”A good person-centered care on distance” – Dr Virginia Zazo, Medical Chief 1177 Direkt, Senior Consultant, dermatologist, Region Västerbotten, Sweden Response from: – Bengt Eliasson, President, Swedish Epilepsy Association – Björn Ehlin, President, Swedish Diabetes Association Moderator: – Hanna Brodda, Science journalist, Mediefy, Sweden
10:25 parallell seminars	Hörsalen (in English)	WHEN ONE PART OF THE BODY IS SUFFERING, THE WHOLE BODY WILL SUFFER, BUT WHO HAS GOT THE RESPONSIBILITY FOR THAT? It is not uncommon that a patient looking for care but need input for multiple symptoms, regardless age and with or without disabilities. How can healthcare see and handle already multi disease patients as people in need of care after cancer or transplantations e.g? ”How many body parts did you say?” A rare diagnose often means that several parts of the body is affected by the diagnose in some way. The kidneys, heart, brain or stomach etc. This means that there has to be several visits to healthcare where each of them is focusing on one part at the time. This means a lot of visits with none or small opportunities to co-ordinate, communicate and share information in a expedient manner. Through a cohesive care plan the resources can be used in a better way. – Stephanie Juran, Project leader, Swedish Association for Rare Diseases ”Network Medicine – a way of working to see the whole patient” Networking Medicine is the application of networking science to identify, prevent and to treat diseases. This area focus on how to use network topology and networking dynamics to identify diseases and to develop medical treatments crossover the diagnoses boarders. – Dr Paolo Parini, Clinical Chemistry, Senior Consultant, Director of Research & Development, Education and Innovation, Karolinska Institute & Karolinska Hospital, Sweden Moderator: – Petra Eurenius, Senior Public Affairs Consultant, Communication Specialist, Sweden
11:05		COFFEE BREAK
11:25 parallell seminars	Hela världen (in Swedish)	EQUAL ACCESS TO TREATMENTS FOR ALL TYPES OF DIAGNOSES The Healthcare Act in Sweden, HSL, talks about priorities in healthcare – namely the principle of human value, the need- and solidarity principle, and the principle of costeffectiveness. How can access to drugs and other treatments be equal, despite diagnose? ”Results from the govermental investigation about access to orphan drugs for patients with rare diseases” The Swedish Government assigned the The Dental and Pharmaceutical Benefits Agency, TLV in 2022 to analyze different ways for action to increase the access for orphan drugs for patients with rare diseases. What are the results and the proposals to give all patients and even people with rare diseases the best treatment? – Sofie Alverlind, Project leader, TLV Response from patient & life science representatives – Lise-lott Eriksson, President of Myeloma Patients Europe – MPE – Jenni Nordborg, Manager International Relations, LIF – the research-based pharmaceutical industry in Sweden Moderator: – Petra Eurenius, Senior Public Affairs Consultant, Communication Specialist, Sweden
11:25 parallell seminars	Hörsalen (in English)	”Person-centered care with help of AI?” – Professor Axel Wolf, Senior Consutant Nurse Anaesthetist, Health Care Sahlgrenska Academy and Managing Director, at the Centre of Person-Centred Care, Gothenburg University, Sweden ”Precision health – is it the same as person centered care?” – Professor Fredrik Nikolajeff, Luleå Technical University, Sweden Moderator: – Magnus Lejelöv, CEO Colivia, Sweden
12:10		LUNCH
12:50	Hörsalen	THE WAY TO A PERSON-CENTERED CARE THROUGH LEGISLATION A law on the Right of Citizens and Patients to Personalized Medicine has been promulgated by the Romanian President in May 2023. The law is a world first, an exemplary top-down implementation model of personalized medicine in the context of the failure of many other bottom-up approaches in the last many years. – Dr Marius Geanta, Co-founder and President of the Center for Innovation in Medicine, Romania
13:20		BREAK
13:25 parallell seminars	Hela världen (in Swedish)	”Do precision medicine give the possibilities for treatment of each patient’s condition as we think?” Precision medicine creates great opportunities with the starting point from each individual’s genetic conditions, to produce better treatments, but at the same time there are risks being handled. The development has so far affected the healthcare system in a limited extent but will probably affect all areas in healthcare in the future. How do we create value over time for patients and citizens with precision medicine? – Anna Alassaad, Project Leader, TLV Response from patient perspectives – Marie Sten, Vice president, The Swedish Disability Rights Federation – Kerstin Sollerbrant, Senior Expert Research, The Swedish Childhood Cancer Fund Moderator: – Magnus Lejelöv, CEO Colivia, Sweden
13:25 parallell seminars	Hörsalen (in English)	Introduction to The Personalised Cancer Care Alliance and the position paper on Personalised Cancer Care in the Eastern Mediterranean Region – Penilla Gunther, Founder, FOKUS Patient® Panel discussion How can we use the experience from this position paper to reach out to our citizens from that area living in our Nordic Countries to create a real person-centered care? – Dr Roosi Verendel Nyberg, Specialist General Medicine / Family Medicine, Department for Occupational and Environmental Medicine, Region Örebro, Sweden – Sineva Ribeiro, President Swedish Nurse Association Moderator: – Penilla Gunther, Founder, FOKUS Patient®
14:05		BREAK
14:10	Hörsalen (in both Swedish and English)	THE ANNUAL PRIZE ”PATIENT ADVOCATES OF THE YEAR AWARD” FOKUS Patient® annual award for extraordinary patient advocacy the past year, 2022. Nominees: – FHDBF: The Organisation for Deaf and hearing Impaired Children and their Families – HCM SS: The Hypertrophic Cardiomyopathy Swedish Society The jury: – Jessica Lundström, Director Market Access, BMS Sverige – Katarina Johansson, Former Chair the Network against Cancer – Alexandra Svanström, Policy & Patient Affairs Manager, AstraZeneca Sweden – Jonas Edström, Patient Partner, Roche Sweden – Samuel Lagercrantz, Editor-in-Chief, Life Science Sweden
14:50		COFFEE BREAK
15:10	Hörsalen (in English)	”A European standard for person centered care will help both HCPs and patients” Patient participation in healthcare and a minimum of requirements for person centered care is something you should see more of in healthcare. Can a European standard show the way? – Professor Axel Wolf, Senior Consutant Nurse Anaesthetist, Health Care Sahlgrenska Academy and Managing Director, at the Centre of Person-Centred Care, Gothenburg University, Sweden ”Standards and checklists – tools for patient safety to secure a person-centered healthcare” – Mirka Cikkelova, Secretary General, EUPSF – European Patient Safety Foundation, Belgium Moderator: – Hanna Brodda, Science Journalist, Mediefy, Sweden
15:50		BREAK
15:55	Hörsalen (in English)	HOW TO MEASURE PERSON CENTERED CARE AND IT’S OUTCOMES? The American institute PCORI is working to understand and to measure person centered care. It contributes to greater knowledge for patients what to choose between and what works. – Nakela L Cook, Executive Director at Patient-Centered Outcomes Research Institute (PCORI)
16:15		PANEL DISCUSSION – REFLECTIONS FROM TODAY – Dr Marius Geanta, Co-founder and President of the Center for Innovation in Medicine, Romania – Daniel Ågren, Personalised Health Care Lead at Roche Sweden – Malin Gabrielsson, Regional Councellor, Region of Vastmanland, Member of The Committee on Healthcare, SKR – Swedish Local and Regional Authorities – Johanna Lidén, Medical Head, Biopharmaceuticals Business Unit (BBU), AstraZeneca Sweden
16:55		CLOSING SESSION
17:00		THANKS FOR TODAY!
19:00		NETWORKING EVENT WITH FOOD, DRINKS AND MUSIC! Special registration needed.

SPEAKERS

Anna Alassaad
Project Leader, TLV – The Dental and Pharmaceutical Benefits Agency, Sweden.

Sofie Alverlind
Project Leader, The Dental and Pharmaceutical Benefits Agency, TLV, Sweden.

Hanna Brodda
Science Journalist, specialized in life science and health care, Mediefy, Sweden.

Mirka Cikkelova
Secretary General, European Patient Safety Foundation, Belgium.

Nakela L Cook
Executive Director at Patient-Centered Outcomes Research Institute (PCORI).

Jonas Edström
Patient Partner, Roche Sweden.

Björn Ehlin
President, Swedish Patient Organisation for Diabetes.

Bengt Eliasson
President, Swedish Epilepsy Association. Former Member of Parliament.

Lise-lott Eriksson
President of Myeloma Patients Europe – MPE.

Petra Eurenius
Co-Founder FOKUS Patient®, Senior Communication Consultant Life Science.

Malin Gabrielsson
Regional Councellor, Region of Vastmanland, Member of The Committee on Healthcare, SKR – Swedish Local and Regional Authorities.

Marius Geanta
Co-founder and President of the Center for Innovation in Medicine, Romania.

Frederico Guanais
Deputy Head, Health Division at OECD, France.

Penilla Gunther
Founder of FOKUS Patient®, former Member of Parliament, Member of the EU Cancer Mission Board, European Commisson. Presient, EUPSF – European Patient Safety Foundation, Sweden

Mattias Hellström
Co-Founder FOKUS Patient®, CEO Citizens Affairs AB, Sweden.

Katarina Johansson
Former Chair the Network against Cancer.

Stephanie Juran
Investigator and lead project manager, Rare Diseases Sweden. Former researcher, Karolinska Institute.

Samuel Lagercrantz
Editor-in-Chief, Life Science Sweden.

Magnus Lejelöv
CEO, Colivia Sverige AB. Pharmaceutical Chemistry with long-time experience from the life science industry, now in staffing company for health care.

Johanna Lidén
Medical Head, Biopharmaceuticals Business Unit (BBU), AstraZeneca Sweden.

Jessica Lundström
Director Market Access, BMS Sverige.

Dr Neda Milevska Kostova
President of IAPO – International Alliance of Patient Organisations , Switzerland. Postdoctoral Researcher – Antimicrobial Stewardship in resource-limited settings, The Netherlands. President of the Centre for Regional Policy Research and Cooperation “Studiorum“ (CRPRC) – a think-tank for the Republic of Macedonia.

Prof. Fredrik Nikolajeff
Medtech, Care and medtech, the Institution of health, learning and technics, Luleå Technical University, Sweden. President Swedish Society for Medtech.

Jenni Nordborg
Director of International Affairs, LIF – The Swedish Association of Pharmaceutical Industry. Former National Life Science-coordinator, Sweden.

Jesper Olsson
Manager, Digital Health, Swedish Medtech. Ph D Medical Management, innovation and improvement knowledge.

Prof. Paolo Parini
Professor, Clinical Chemistry, Senior Consultant, Director of Research & Development, Education and Innovation, Karolinska Institute & Karolinska University Hospital, Sweden. Member of the Scientific Committee of the Center E. Grossi Paoletti, University of Milano. Officer of the Order of Merit of the Italian Republic.

Sineva Ribeiro
President Swedish Nurse Association.

Kerstin Sollerbrant
Senior Expert Research, The Swedish Childhood Cancer Fund.

Marie Sten
Vice president, The Swedish Disability Rights Federation.

Alexandra Svanström
Policy & Patient Affairs Manager, AstraZeneca Sweden.

Roosi Verendel Nyberg
Specialist General Medicine / Family Medicine, Department for Occupational and Environmental Medicine, Region Örebro, Sweden.

Prof. Axel Wolf
Senior Consutant Nurse Anaesthetist, Health Care Sahlgrenska Academy and Managing Director, at the Centre of Person-Centred Care, Gothenburg University, Sweden.

Dr Virginia Zazo
Medical Chief Officer, 1177 Direkt, Senior Consultant Dermatologist, Norrland University Hospital, Region Västerbotten.

Daniel Ågren
Personalised Health Care Lead at Roche Sweden.

9/10: FOKUS Patient® – Person Centered Care

PROGRAM – will be updated with more speakers

SPEAKERS

Citizens Affairs AB

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