People-Centered Health Care, Public-Patient Involvement in Health Research, Community-University Engagement and Training Needs to Make it Happen

Fecha

18/05/2022

Hora

15.00 - 17.00 h (CEST)

Lugar

Magna Room, Historic Building of the University of Barcelona
(Gran Via de les Corts Catalanes, 585) Barcelona.

Ponentes

Anne-Sophie Gresle (ISGlobal), Joan Escarrabill (LivingLab, Hospital Clínic de Barcelona) et al.

From the healthcare perspective, a paradigm shift is taking place and call for putting the values and priorities of patients first. The concept of Patient Experience has become the third pillar of health care quality, in addition to effectiveness and safety. Therefore, understanding and giving priority to the XPA is a mandatory action step to achieve patient involvement and peoplecentred collaborative healthcare.

At the same time in the health research field, concepts like Citizen Science or Public and Patient involvement in Health Research are developing and gaining interest for many stakeholders. These concepts call for a more open, collaborative and inclusive health research in order to better respond to society and patient’s problems and priorities. Opening up research processes to co create research priorities and projects through an active participation of all the direct stakeholders is a good way to achieve people-centred health research.

Healthcare and health research should not be two areas that work separately and should seek to provide feedback to each other.

This session will therefore be articulated around the concept of “Participation” in both areas, and will address these different topics and questions:

• What role can play universities in supporting a more active collaboration with their community? What is and how has evolved the concept of Community-University Engagement these past decades?
• What is XPA? How to evaluate and introduce XPA within health care to respond to patients and caregivers’ priorities and needs? How XPA can help undercover healthcare research priorities for patients?
• What is Citizen Science / Public & Patient Involvement in health research? How to prioritize research according to civil society and patient’s needs? How to opening up research processes to make them more porous to society? What kind of science-society mechanisms exist to operationalize these types of projects?
• What legal frameworks could enhance these practices? The design of the norms referring to the protection and well-being of patients should integrate participatory channels of dialogue beyond actual procedures. Is it necessary to guarantee specific participation of citizens, both collectively and individually? Is it necessary as well to collect their opinions regarding the improvement of the laws?
• What are the training needs for all actors to be able to work together in an effective way? how to integrate these into the teaching and research programs?

The session will be a unique opportunity to hear from different experiences around of the world, and learn together about the benefits and impacts of participatory practices, both in healthcare and in health research.

It is organized in collaboration with the UNESCO Chair for Community Based Participatory Research and Social Corporate Responsibility for Higher Education Institutions. It will therefore offer the opportunity to learn from international academics as well as local speakers highlighting the work developed in the Clinic Public Health Corporation context.

Participants

Prof George Openjuru
Vice-Chancellor, Gulu University, Uganda. He will give an overview of the development of the idea and the emergence of Community-University Engagement as a concept. He will give some background on how the concept has evolved over the past 30/50 years. He will also present what Gulu University is doing around Health and Community.

Dr Rene Oosthuizen
Academic lead, K4C Hub, Rhodes University, South Africa. He will talk about their Community-University Engagement department, how they are organized and how they work, what policies in South Africa support their endeavors, and she will illustrate their work explaining what happened during the COVID pandemic, how they worked with the community and with different stakeholders.

Dr Alfonso Reye
Vice Chancellor of the University of Ibague from Colombia Local Experiences

Dra Montserrat Puig Llobet
Vice-Rector for Equality and Gender, Barcelona University. She will talk about the actions and activities that the University of Barcelona is developing under the SDGs framework, especially in regards with Health, Equity and Participation.

Dr Joan Escarrabill
LivingLab Director, Hospital Clinic of Barcelona. He will talk about the concept of Patient Experience, and how the Hospital Clinic, through the work of its LivingLab, is evaluating and implementing patients’ needs and priorities for a more people centered healthcare.

Dr Michela Bertero
Scientific Director IDIBAPS (TBC). She will talk about Open Science and Public & Stakeholder Involvement in biomedical research, in the framework of the European ORION Open Science project. What did we learn? What are we still missing in our context to further develop engagement practices?

Dr Elena Lauroba
Full Professor of Civil Law, Department of Private Law, Faculty of Law, Barcelona University. She will talk about if and how the design of the norms referring to the protection and well-being of patients should integrate participatory channels of dialogue beyond actual procedures.

Anne-Sophie Gresle
Moderator of the session. Senior Project Manager, Living Lab Hospital Clinic and Barcelona CaixaResearch Living Lab - Barcelona Institute for Global Health. International Experiences.

Addressed to

• Health professionals
• Health researchers
• Project managers
• Students
• Policy makers
• Civil society organizations
• Patients and caregivers