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Biomedical Research in a Digital Health Framework Cano et al. Journal of Translational Medicine 2014, 12(Suppl 2):S10 http://www.translational-medicine.com/content/12/S2/S10 RESEARCH Open Access Biomedical research in a Digital Health Framework Isaac Cano1*, Magí Lluch-Ariet2, David Gomez-Cabrero3, Dieter Maier4, Susana Kalko1, Marta Cascante1,5, Jesper Tegnér3, Felip Miralles2, Diego Herrera5,6, Josep Roca1,7, Synergy-COPD consortium Abstract This article describes a Digital Health Framework (DHF), benefitting from the lessons learnt during the three-year life span of the FP7 Synergy-COPD project. The DHF aims to embrace the emerging requirements - data and tools - of applying systems medicine into healthcare with a three-tier strategy articulating formal healthcare, informal care and biomedical research. Accordingly, it has been constructed based on three key building blocks, namely, novel integrated care services with the support of information and communication technologies, a personal health folder (PHF) and a biomedical research environment (DHF-research). Details on the functional requirements and necessary components of the DHF-research are extensively presented. Finally, the specifics of the building blocks strategy for deployment of the DHF, as well as the steps toward adoption are analyzed. The proposed architectural solutions and implementation steps constitute a pivotal strategy to foster and enable 4P medicine (Predictive, Preventive, Personalized and Participatory) in practice and should provide a head start to any community and institution currently considering to implement a biomedical research platform. Background Secondly, the need to extend current trends on open The seminal purpose of the systems medicine design [1] data from the biomedical community [4] to the clinical conceived for the Synergy-COPD project [2] was to gen- practice and the whole society, by engaging citizens and erate knowledge on underlying mechanisms explaining solving privacy and regulatory constraints, Finally, the heterogeneities observed in chronic obstructive pulmon- need for highly applicable user-profiled functionalities ary disease (COPD) patients. The ultimate aim of the for data management and knowledge generation. project was to use such knowledge to refine patient’s Accordingly, innovative and robust Information and stratification, prognosis and treatment response, which Communication Technologies (ICT) will be needed as then should lead to efficient preventive strategies aiming supporting tools to overcome well identified current at modulating disease progress while reducing the bur- functional limitations [5]. den of COPD on healthcare. The concept of Digital Health Framework (DHF) It is well accepted that predictive medicine is opening (Figure 2) emerged from the Synergy-COPD project to entirely new and fascinating scenarios for the interplay foster adoption of predictive medicine. The DHF consists between clinical practice and biomedical research. How- of the articulation of open and modular ICT components ever, at the same time, it is generating novel require- supporting organizational interoperability, and appropriate ments with impact on adoption. Firstly, the need for functionalities, among three main areas, namely: i) infor- multilevel integration of heterogeneous patient informa- mal care, ii) formal care, and, iii) biomedical research. tion (Figure 1), namely: socio-economical, life-style, Briefly, informal care includes any aspect with impact on behavioural, clinical, physiological, cellular and “omics” health (e.g. life style, environmental and behavioural data [3] and their use for the design of a personalised aspects, etc.) occurring in the community, whereas formal digital patient from virtual physiological models. care refers to any interaction with health professionals at different levels of the healthcare system. Biomedical * Correspondence: [email protected] research refers to all research levels from bench to clinical 1 IDIBAPS-Hospital Clínic, CIBERES, Universitat de Barcelona, 08036, Barcelona, and to public health. In our hands, to materialize such an Catalunya, Spain Full list of author information is available at the end of the article ambitious vision, a building block approach is considered © 2014 Cano et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The Creative Commons Public Domain Dedication waiver (http:// creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Cano et al. Journal of Translational Medicine 2014, 12(Suppl 2):S10 Page 2 of 9 http://www.translational-medicine.com/content/12/S2/S10 Figure 1 The holistic approach intrinsic to system medicine of non-communicable diseases (NCDs) prompts the need for multilevel integration of heterogeneous patient information generated by different data sources, namely: environmental, clinical and biological data. necessary. Moreover, the progress from the initial proof- Health Folder (PHF) was successfully piloted [7], as a of-concept to pilot implementation and to extensive supporting tool to achieve long-term sustainability of deployment shall be planned following a stepwise strategy. training-induced effects and promote active life styles in The first building-block was the design and initial COPD patients. The PHF constitutes the second building deployment of an open source Integrated Care Shared block currently being implemented in a health district Knowledge Platform supporting Integrated Care Services (Barcelona-Esquerra, 540.000 inhabitants) in Barcelona as (ICS) for chronic patients, initiated at the EU project a tool to integrate informal and formal care in commu- NEXES [6]. During the life span of NEXES, a Personal nity-based ICS for frail chronic patients. Moreover, the Figure 2 The concept of Digital Health Framework covers the different areas wherein information can be obtained and actions are taken: i) informal care, ii) formal care, and, iii) biomedical research. In this scenario, a personal health folder incorporating patient decision support systems (PDSS) might facilitate the incorporation of data coming from informal care into formal healthcare. In addition, biomedical research, referring to all research levels from clinical to basic research, should be shaped to provide user-profiled functionalities such that research professionals with different profiles can make use of clinical and biomedical knowledge from formal healthcare and heterogeneous biomedical research data sources, ultimately leading to the generation of novel rules that should feed in-place clinical decision support systems (CDSS). Cano et al. Journal of Translational Medicine 2014, 12(Suppl 2):S10 Page 3 of 9 http://www.translational-medicine.com/content/12/S2/S10 Clinical Decision Support Systems (CDSS) generated Table 1 Description of Actors and Roles in the Digital during the Synergy-COPD lifetime [8] has been integrated Health Framework into an ICT platform supporting ICS. Consequently, the Actors Roles Complexity ICT interplay between the first two building blocks (informal support and formal care) is operational in a controlled deployment patient COPD- Self- PC PHF-PDSS moderate management scenario and is currently evolving toward maturity. We patient COPD-complex Self- PC&Specialist PHF-PDSS shall keep in mind, however, that active citizens/patients management together with a prepared multidisciplinary health work- patient COPD-co-morb Self- PC&Specialist PHF-PDSS force will be the real key drivers of the transition from cur- management rent healthcare practice to full deployment of predictive Primary Care Clinical Primary Care CDSS medicine for chronic patients. Specialized Care Clinical Secondary CDSS The current report focuses on the third building block Care of the DHF, tackling biomedical research (DHF-research). Clinical Scientist Research Academic DHF- The manuscript analyses architectural design, functional- research ities and implementation strategies of interoperability Basic Scientist Research Academic DHF- research between healthcare and biomedical research. COPD-moderate, patient with moderate functional impairment and low activity disease; COPD-complex, patient with moderate to severe functional Progress from this paper impairment with active disease both at pulmonary and systemic levels We report on the key elements needed for the design of (skeletal muscle dysfunction/wasting); COPD-co-morb, patient with moderate functional impairment, high activity disease and co-morbid conditions the DHF-research, showing interoperability with the open (metabolic syndrome and cardiac failure);PC, Primary Care professionals Integrated Care Shared Knowledge Platform already (doctor & nurse); Specialized Care, Specialized Care (doctor&nurse); Clinical Scientist, Translational research with clinical focus; Basic Scientist, Translational operational in the Barcelona-Esquerra health district. research with focus on basic sciences; PHF-PDSS, personal health folder From the methodological standpoint, the manuscript per- including Patient Decision Support Systems; CDSS, Clinical Decision Support forms a systematic description of the DHF-research Systems; DHF-research, Digital Health Framework-Biomedical research platform. architecture and functionalities based on the lessons learnt in
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