User‐driven health care – answering multidimensional information needs in individual patients utilizing post–EBM approaches: a conceptual model

Abstract

Evidence based on average patient data, which occupies most of our present day information databases, does not fulfil the needs of individual patient-centred health care. In spite of the unprecedented expansion in medical information we still do not have the types of information required to allow us to tailor optimal care for a given individual patient. As our current information is chiefly provided in disconnected silos, we need an information system that can seamlessly integrate different types of information to meet diverse user group needs. Groups of certain individual medical learners namely patients, medical students and health professionals share the patient's need to increasingly interact with and seek knowledge and solutions offered by others (individual medical learners) who have the lived experiences that they would benefit to access and learn from. A web-based user-driven learning solution may be a stepping-stone to address the present problem of information oversupply in medicine that mostly remains underutilized, as it doesn't meet the needs of the individual patient and health professional user. The key to its success would be to relax central control and make local trust and strategic health workers feel more engaged in the project such that it is truly user-driven.

Evidence‐based healthcare, clinical knowledge and the rise of personalised medicine

“…We move next to two articles from Biswas and colleagues which are similarly concerned with patient‐centredness in health care [114–116], specifically in terms of the information that is required to provide it. Separating their work into the ruminations of a conceptual model [125] before proceeding to describe an operational model [126], Biswas et al. begin by defining user‐driven health care as: ‘Improved health care achieved with concerted collaborative learning between multiple users and stakeholders, primarily patients, health professionals and other actors in the care giving collaborative network across a web interface’.…”

“…Biswas and associates recognise that one of the original intentions of the advocates of EBM was to address this concern, but are equally clear that one of the biggest challenges for EBM has been to keep care patient‐centred and they usefully illustrate this dilemma by reflecting upon Armstrong's discussions [128]. In their accompanying paper, Biswas and co‐workers [126] present an operationalisation, as it were, of the concepts discussed in their preceding work [125], as an experimental prelude to a systematic evaluation of the validity of their technique within more extensive studies. The JECP wishes the authors well in taking the developed model described here to the Malaysian Government in order to secure the necessary funding and collaboration that must now constitute the next stage of their important project.…”

Person-centered healthcare in the information age: Experiences from a user driven healthcare network

“…In 2008, we identified a person-centered 'user driven healthcare' (UDHC) model already active in web space that aimed at "Improved healthcare achieved with concerted collaborative learning between multiple users and stakeholders, primarily patients, health professionals and other actors in the care giving collaborative network across a web interface" [8].…”

Using patient data for patients’ benefit

“…[4][5][6][7][8][9][10][11][12][13][14][15] Finally, the optimism in data driven care, whether in precision medicine or clinical decision support tools, must be evidence based-and that evidence should be patient centred.…”