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      The Precision Health and Everyday Democracy (PHED) Project: Protocol for a Transdisciplinary Collaboration on Health Equity and the Role of Health in Society

      , BA, MA, PhD 1 , 2 , , , MD, PhD 3 , , PhD 2 , 4 , , RN, PhD 2 , 4
      (Reviewer), (Reviewer), (Reviewer)
      JMIR Research Protocols
      JMIR Publications
      precision health, health care access, health literacy, everyday democracy

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          The project “Precision Health and Everyday Democracy” (PHED) is a transdisciplinary partnership that combines a diverse range of perspectives necessary for understanding the increasingly complex societal role played by modern health care and medical research. The term “precision health” is being increasingly used to express the need for greater awareness of environmental and genomic characteristics that may lead to divergent health outcomes between different groups within a population. Enhancing awareness of diversity has parallels with calls for “health democracy” and greater patient-public participation within health care and medical research. Approaching health care in this way goes beyond a narrow focus on the societal determinants of health, since it requires considering health as a deliberative space, which occurs often at the banal or everyday level. As an initial empirical focus, PHED is directed toward the health needs of marginalized migrants (including refugees and asylum seekers, as well as migrants with temporary residency, often involving a legally or economically precarious situation) as vulnerable groups that are often overlooked by health care. Developing new transdisciplinary knowledge on these groups provides the potential to enhance their wellbeing and benefit the wider society through challenging the exclusions of these groups that create pockets of extreme ill-health, which, as we see with COVID-19, should be better understood as “acts of self-harm” for the wider negative impact on humanity.


          We aim to establish and identify precision health strategies, as well as promote equal access to quality health care, drawing upon knowledge gained from studying the health care of marginalized migrants.


          The project is based in Sweden at Malmö and Lund Universities. At the outset, the network activities do not require ethical approval where they will not involve data collection, since the purpose of PHED is to strengthen international research contacts, establish new research within precision strategies, and construct educational research activities for junior colleagues within academia. However, whenever new research is funded and started, ethical approval for that specific data collection will be sought.


          The PHED project has been funded from January 1, 2019. Results of the transdisciplinary collaboration will be disseminated via a series of international conferences, workshops, and web-based materials. To ensure the network project advances toward applied research, a major goal of dissemination is to produce tools for applied research, including information to enhance health accessibility for vulnerable communities, such as marginalized migrant populations in Sweden.


          There is a need to identify tools to enable the prevention and treatment of a wide spectrum of health-related outcomes and their link to social as well as environmental issues. There is also a need to identify and investigate barriers to precision health based on democratic principles.

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          Most cited references61

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          An Integrative Model of Patient-Centeredness – A Systematic Review and Concept Analysis

          Background Existing models of patient-centeredness reveal a lack of conceptual clarity. This results in a heterogeneous use of the term, unclear measurement dimensions, inconsistent results regarding the effectiveness of patient-centered interventions, and finally in difficulties in implementing patient-centered care. The aim of this systematic review was to identify the different dimensions of patient-centeredness described in the literature and to propose an integrative model of patient-centeredness based on these results. Methods Protocol driven search in five databases, combined with a comprehensive secondary search strategy. All articles that include a definition of patient-centeredness were eligible for inclusion in the review and subject to subsequent content analysis. Two researchers independently first screened titles and abstracts, then assessed full texts for eligibility. In each article the given definition of patient-centeredness was coded independently by two researchers. We discussed codes within the research team and condensed them into an integrative model of patient-centeredness. Results 4707 records were identified through primary and secondary search, of which 706 were retained after screening of titles and abstracts. 417 articles (59%) contained a definition of patient-centeredness and were coded. 15 dimensions of patient-centeredness were identified: essential characteristics of clinician, clinician-patient relationship, clinician-patient communication, patient as unique person, biopsychosocial perspective, patient information, patient involvement in care, involvement of family and friends, patient empowerment, physical support, emotional support, integration of medical and non-medical care, teamwork and teambuilding, access to care, coordination and continuity of care. In the resulting integrative model the dimensions were mapped onto different levels of care. Conclusions The proposed integrative model of patient-centeredness allows different stakeholders to speak the same language. It provides a foundation for creating better measures and interventions. It can also be used to inform the development of clinical guidance documents and health policy directives, and through this support the shift towards patient-centered health care.
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            Deliberations about deliberative methods: issues in the design and evaluation of public participation processes.

            A common thread weaving through the current public participation debate is the need for new approaches that emphasize two-way interaction between decision makers and the public as well as deliberation among participants. Increasingly complex decision making processes require a more informed citizenry that has weighed the evidence on the issue, discussed and debated potential decision options and arrived at a mutually agreed upon decision or at least one by which all parties can abide. We explore the recent fascination with deliberative methods for public involvement first by examining their origins within democratic theory, and then by focusing on the experiences with deliberative methods within the health sector. In doing so, we answer the following questions "What are deliberative methods and why have they become so popular? What are their potential contributions to the health sector?" We use this critical review of the literature as the basis for developing general principles that can be used to guide the design and evaluation of public involvement processes for the health-care sector in particular.
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              From Big Data to Precision Medicine

              For over a decade the term “Big data” has been used to describe the rapid increase in volume, variety and velocity of information available, not just in medical research but in almost every aspect of our lives. As scientists, we now have the capacity to rapidly generate, store and analyse data that, only a few years ago, would have taken many years to compile. However, “Big data” no longer means what it once did. The term has expanded and now refers not to just large data volume, but to our increasing ability to analyse and interpret those data. Tautologies such as “data analytics” and “data science” have emerged to describe approaches to the volume of available information as it grows ever larger. New methods dedicated to improving data collection, storage, cleaning, processing and interpretation continue to be developed, although not always by, or for, medical researchers. Exploiting new tools to extract meaning from large volume information has the potential to drive real change in clinical practice, from personalized therapy and intelligent drug design to population screening and electronic health record mining. As ever, where new technology promises “Big Advances,” significant challenges remain. Here we discuss both the opportunities and challenges posed to biomedical research by our increasing ability to tackle large datasets. Important challenges include the need for standardization of data content, format, and clinical definitions, a heightened need for collaborative networks with sharing of both data and expertise and, perhaps most importantly, a need to reconsider how and when analytic methodology is taught to medical researchers. We also set “Big data” analytics in context: recent advances may appear to promise a revolution, sweeping away conventional approaches to medical science. However, their real promise lies in their synergy with, not replacement of, classical hypothesis-driven methods. The generation of novel, data-driven hypotheses based on interpretable models will always require stringent validation and experimental testing. Thus, hypothesis-generating research founded on large datasets adds to, rather than replaces, traditional hypothesis driven science. Each can benefit from the other and it is through using both that we can improve clinical practice.

                Author and article information

                JMIR Res Protoc
                JMIR Res Protoc
                JMIR Research Protocols
                JMIR Publications (Toronto, Canada )
                November 2020
                30 November 2020
                : 9
                : 11
                : e17324
                [1 ] Department of Global Political Studies Malmö University Malmö Sweden
                [2 ] Malmö Institute for Studies of Migration, Diversity & Welfare Malmö University Malmö Sweden
                [3 ] Department of Experimental Medical Science Lund University Lund Sweden
                [4 ] Department of Care Sciences Malmö University Malmö Sweden
                Author notes
                Corresponding Author: Michael Strange michael.strange@ 123456mau.se
                Author information
                ©Michael Strange, Carol Nilsson, Slobodan Zdravkovic, Elisabeth Mangrio. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 30.11.2020.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org, as well as this copyright and license information must be included.

                : 19 December 2019
                : 21 August 2020
                : 15 October 2020
                : 3 November 2020

                precision health,health care access,health literacy,everyday democracy


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