PHED - Precision Health and Everyday Democracy

Everyday democracy

• A paradigm shift in healthcare: ´patient-centred´;
• Relates to the representative model of democracy – via participation (e.g. elections);
• But also includes a focus on ´informed consent´:
  • Information on their condition, but also their options;
  • Tailoring to diverse needs.
  • Follow-up support beyond the immediate condition, i.e. counselling.
  • Understanding how the patients' condition affects their family and other close relations, and that those relations are relevant to their healthcare.
• Deliberative democracy? – dialogue that creates a democratic subject.

Potential drivers:

• Legitimacy;
• Quality;
• Open to diverse population data

Role of healthcare in society?

• To cure illness, and enhance well-being;
• For marginalised communities, also one of the main ways in which they experience being part of an organised society.

Everyday democracy

• The ´democratic´ element of healthcare – the ´everyday´ experience of being in a society.
  • Inclusion/exclusion – who gets access to healthcare, but also who is given the means to be an informed patient. This also includes pharmaceutical development.
  • Relations of power – gender, race. Relates also to the design of integration policies and their impact on well-being.
  • Empowerment and mobility – the role of healthcare (and health research) in ensuring persons can engage in society.

• Dr John Allen, Department of Pharmacology, University of Texas Medical Branch, Galveston, TX, USA.
• Dr Melissa Bondy, Associate Director of Cancer Prevention and Population Sciences at the Dan L Duncan Comprehensive Cancer Center, Baylor College of Medicine, USA.
• Dr Kathryn A. Cunningham, Chauncey Leake Distinguished Professor of Pharmacology; Director, Center for Addiction Research; Vice-Chair, Department of Pharmacology and Toxicology, University of Texas Medical Branch (UTMB), Galveston, Texas, USA.
• Dr Gilberto Barbosa Demont, Department of Biochemistry, Institute of Chemistry, Universidade Federal do Rio de Janeiro, Brazil.
• Dr Philip J. Lupo, Departments of Pediatrics (primary) and Medicine (secondary) at Baylor College of Medicine, and adjunct at Human Genetics Center, Division of Epidemiology, Human Genetics and Environmental Sciences, University of Texas School of Public Health, Houston, Texas, USA.
• Dr Fábio César Sousa Nogueira, Department of Biochemistry, Institute of Chemistry, Universidade Federal do Rio de Janeiro, Brazil.

Funding for AI project

Major grant awarded by WASP-HS programme means a new assistant professor and 2 PhDs to join PHED

14.3 Million Euro Research Application Coordinated by PHED

In June 2020, the PHED network submitted a major research application to the EU's Horizon 2020 Programme, with the title 'PRePARe' that speaks to several growing global health issues, including the Covid-19 pandemic during which the application was written.

Not afraid to go big - transdisciplinary research project applies for 14,3 million Euros

Project abstract

PRePARe is an innovative and transdisciplinary project for enhanced clinical management and prevention of resistant bacterial infections. It is focused on what we term ‘marginalised migrants’ (MMs) – due to the urgent situation in which such individuals already exposed to poor health conditions are often hosted in European regions of high prevalence where there is a risk of contracting antimicrobial-resistant (AMR) infections. Their engagement with the local Health system may be poor due to difficulties in communication, lack of continuity of care, legal status or poor health literacy. Clinical practices focused on preventing AMR amongst MMs must be sensitive to the broader societal context in which media narratives often stigmatise MMs as a health risk, including when protecting MMs against pathogens common amongst the host population.

Our integrated programme consists of 4 components: a) development of a clinical management plan based on participatory processes involving key stakeholders that seek to better engage MM populations with the host Healthcare system, b) clinical trial of a standard probiotic formulation to determine its ability to prevent the MMs’ susceptibility to AMR pathogens and genes in the host environment, c) development of an eHealth platform to increase access for MM communities to the host country healthcare system, and d) identification of societal factors detrimental to clinical management when working with MMs, and development of mitigation strategies.
The study will first develop this model within Sweden, a low-endemic site but with advanced experience in migrant health integration, and then adapt and apply it at two pilot sites of high AMR prevalence: Cyprus and Romania. Utilizing the EU-India Co-Funding Programme, we will include India as a third pilot location as a comparison enabling wider generalisation of the expected data findings with significant benefits for both Europe and India.

October 2019 Workshop

• Precision Health and Everyday Democracy (PHED)
• International Workshop1st-3rd October 2019 workshop. Jointly hosted by Lund and Malmö University.
• Precision Health and Everyday Democracy (PHED) International Conference and Workshop

Recent advances within healthcare and medical research have been uneven globally, but also within nation-states, with the result that there is growing interest in the relevance of both environmental and genomic factors in determining how best to treat patients and ensure a healthy society. At the same time, health has become an increasingly central issue within how societies mark out their borders and internal structures, excluding those without the sufficient residency papers, or segregating access along wealth, racial, or gender lines. In that context, health practitioners have spoken increasingly of ’Precision Health’, meaning greater understanding and collection of data that is sensitive to these disparities so as to better tailor healthcare towards different communities, both to enhance well-being, but counter the worst consequences of societal inequalities.

Drawing on the Social Sciences, health is understood as a central mechanism not only for enhancing welfare, but also through which everyday people experience being part of society. For over two decades, scholars working in both the Health and Social Sciences have spoken of ’Health Democracy’ – using democratic models to enhance patient access to healthcare, but also to better study the role of healthcare and medical research within society. We use the term ’everyday democracy’ to move further in that direction, understanding mundane medical and health interactions as fundamental to the shaping of contemporary society.The workshop builds upon this diverse discussion, bringing together a highly interdisciplinary group of scholars from the Medical, Health, and Social Sciences to debate these themes. The workshop that follows will take the more themes developed during the conference and, through engaging health practitioners, consider the implications for the present as well as future healthcare and medical research.The event is part of the Precision Health and Everyday Democracy (PHED) project, funded by the Swedish Foundation for International Cooperation in Research and Higher Education (STINT - Stiftelsen för internationalisering av högre utbildning och forskning).The event is also supported by the Rethinking Democracy (REDEM) and Collaborative Future-Making Research Platforms at Malmö University.

• April 2019 Global Workshop at the University of Texas Medical Branch, Galveston
• 1st STINT Global Workshop: April 25th-26th, 2019 at the University of Texas Medical Branch (UTMB), Galveston, Texas, USA.

Project members met for two days of presentations and discussions focused on the theme of ’precision healthcare, precision medicine, and everyday democracy’, and that brought together the core partners and represented three countries. The event also included a meeting with post-graduate research students based at UTMB.

The high-level event was generously hosted by the Center for Addiction Research (CAR) at the University of Texas Medical Branch, with co-financing between CAR and STINT.