User-Driven Healthcare and Narrative Medicine: Utilizing Collaborative Social Networks and Technologies

User-Driven Healthcare and Narrative Medicine: Utilizing Collaborative Social Networks and Technologies

Rakesh Biswas (People’s College of Medical Sciences, India) and Carmel Mary Martin (Northern Ontario School of Medicine, Canada)
Indexed In: SCOPUS
Release Date: October, 2010|Copyright: © 2011 |Pages: 642
DOI: 10.4018/978-1-60960-097-6
ISBN13: 9781609600976|ISBN10: 1609600975|EISBN13: 9781609600990
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Description & Coverage

E-healthcare, Health 2.0, and user driven healthcare are steadily increasing in popularity among patients and healthcare professionals. In spite of this, there is surprisingly little written about the wealth of information available on the Web created by individual healthcare users, in terms of their experiential disease narratives, potential learning, and improved healthcare results.

User-Driven Healthcare and Narrative Medicine: Utilizing Collaborative Social Networks and Technologies fills this gap by exploring various individual user driven strategies that move towards solving multiple clinical system problems in healthcare, utilizing real life examples. Documenting individual concrete experiences, reflective observations, abstract conceptualizations and particular instances of active experimentation, this text is a valuable resource not only for the healthcare academic community, but patients interested in social networking to improve their own healthcare outcomes.


The many academic areas covered in this publication include, but are not limited to:

  • Community ontologies in user driven healthcare
  • Medical education with Web 2.0
  • Online health community organizations
  • online health education
  • Online learning in discussion groups
  • Patient Journey Record Systems
  • Personal Narratives and Implications for Social Networking
  • Social constructions of chronic diseases
  • Social Networks for Health Innovation
  • Transplant Medicine 2.0
  • Ubiquitous Information Therapy
Reviews and Testimonials

"The strength of the book lies in personal stories and stories (conversations) about how to interact with other doctors, health professionals, and patients, both face to face and using the Internet. The detailed table of contents at the beginning will help the reader decide which chapters to read and in which order. [...] The book caters to a wide range of readers, from physicians, other health personnel, patients, other academics, and interested lay readers. The editors are to be congratulated on their work and the publishers for their high standards."

– P. Ravi Shankar, MD, KIST Medical College in Lalitpur, Nepal. The Pharos (Autumn 2011).

As doctor-driven medicine sinks into disreputable old age, user-driven medicine is the hope of the future. This transition is already taking place across the world, and doctors and other health professionals should welcome it and play a creative role in shaping it. This book is a beginning in that process: a collecting together of materials, of stories, of insights, of ways of thinking, of problems and potential solutions, from users (patients" - a word which needs to disappear) and from health professionals. A new kind of shared health care will emerge out of the current chaos not by the imposition of a single will, but through the shaping that emerges spontaneously from the creative efforts of many individuals and many different forces. The unprecedented privilege of our time is that we can each participate in this on a global scale, and this book is one illustration of how this process can get started."

– Richard Lehman, Oxford University, UK

... A global group of contributors working in communication, public health, medicine, mental health, education, and other fields, as well as patients themselves, discuss how patients are joining networks, locating other patients or professionals, and exchanging narratives of their experiences in healthcare, and how this is improving outcomes in healthcare in areas like hematology, gastroenterology, and chronic disease. They also relate how different factors influence doctors and inform their understanding of the patient narrative, and how tools like patient records can be used. ...

– Sci Tech Book News,

Overall, this book covers an important subject and introduces readers to a variety of topics within the broad areas of narrative medicine and user-driven healthcare.

– Lisa Ennis, MA, MS, University of Alabama at Birmingham. Doody's Book Review .
Table of Contents
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Editor Biographies

Rakesh Biswas MD is a professor of Medicine in LN Medical College and Research Center, Bhopal, India. His interests include clinical problem solving applied to patient centered health care and health education. He has in the past shared his experiences in clinical problem solving extensively through global academic journals and books and is a founding editor of International Journal of User Driven healthcare, regional editor for the Journal of Evaluation in Clinical Practice, UK as well as board member of BMJ case reports, UK.

He is currently engaged in developing a health care blended-learning ecosystem through a network of global multiple learner stakeholders that includes medical student and health professionals from diverse disciplines. It also includes patients along with their relatives in rural and urban India so that they may benefit from this global learning toward their local caring. His primary focus is on optimization of costs in a manner that can still provide highest quality of care in low resource settings.

As all these stakeholders are computer users communicating through the web with a user name the network is also known as 'User Driven Health Care' UDHC network. More here:

The network has currently piloted in rural and urban Indian locations with encouraging responses from patients, medical students and global health professionals connected through the web. The network eventually hopes to propagate 'patient centered learning in India such that medical students and health professionals take pride in their teamwork toward making a positive change in their patients' lives. It hopes to in this manner utilize patient centered learning to build a vital bridge between basic and clinical science professionals that may translate bedside patient needs to solutions from the bench.

Carmel Mary Martin is an Associate Professor of Family Medicine at the Northern Ontario School of Medicine and Visiting Professor, University of Buckingham, UK and Visiting Research Fellow Department of Public Health and Primary Care, Trinity College, Dublin. She is active in clinical general practice with a particular interest in chronic disease and illness, patient centered care and complex systems. Carmel has a large volume of publications around this area and she also edits a journal section on Complexity in the Health Sciences for the Journal of Evaluation in Clinical Practice, UK. Carmel is a lead Clinical Principal Investigator on the Patient Journey Record Program in user driven healthcare at the National Digital Research Center NDRC, an independent organization formed by a consortium of members comprising different academic institutes in Dublin.
Editorial Review Board
  • Joachim Sturmberg, Monash and Newcastle University, Australia
  • Stefan Topolski, U. of Massachusetts School of Medicine, USA
  • Suptendra Nath Sarbadhikari, Head, Biomedical Informatics, Coimbatore, India
  • Joan Young, Independent Researcher, Rockville, Maryland, USA
  • Anjan K Das, Clinical Research Leader, Stempeutics Research, KL, Malaysia
  • Andrew Miles, University of Buckingham, London Campus, UK
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    We welcome you to review a journey that began long back, perhaps when you were born, perhaps when you first became aware of an entity that you identified as yourself, your body.

    Welcome to a reconsideration of this bodily voyage of learning that permeates our cognitive being each day that we live, a voyage that ends only in death (some would say even death is a temporary ending ). Our book is about making sense of this journey that most of us as humans have been fortunate to have begun.

    We begin this book with a focus on individual narrative descriptions of learning journeys in healthcare students/professionals, patients, their relatives and to break the tedium of an anthropocentric healthcare focus, even math and botany enthusiasts.

    Most of these journeys document individual concrete experiences, their reflective observations, abstract conceptualizations and particular instances of their active experimentation.

    For today's learner about health be it as patient or professional, new horizons are opening. New options for sharing the journey with others are emerging. With patient-professional access to Internet the world of”Health 2.0” empowers them to dive into a wealth of information on the diagnoses and therapy offered and received.

    And not least: to join networks, relevant for particular diagnoses, locate other patients or professionals, with comparable problems, and exchange subjective narratives of personal patient or professional journeys through personal bloggings. This is the new – and global – noosphere: the soil, from which user-driven healthcare grows (K. Bjerg, personal communication, 2010).

    It makes a difference if we conceive of patient journey in the sense of the narrow patient journey concept or in the sense of the wider patient journey concept of an individual explorer, whose life-journey earlier or later turns into travelling through pains and problems, encounters with medicine men, passage through admissions, tolls to be paid, - or not afforded -waiting times to be endured, encampment in more or less friendly healthcare institutions, undergoing tortures and sufferings, deprivations and starvations , uncertainties of outcomes, demands of endurance, and potential return to a continuation of previous life voyage, more or less radical change of life-course, or terminal more or less affordable more or less palliative terminal care (K. Bjerg, personal communication, 2010).

    From the individual we move on to the collective and focus on learning trends gleaned from online search engines,

    We may commiserate upon the ways technologies and gadgets are intruding into our lives, so widely necessary and adopted, making all of us dependant and vulnerable to the whims of engineers, commercial markets and administrations.

    New kinds of vulnerabilities are growing upon the human species, not least as our pursuits and their waste is going to thread the ecosystem we share with other species.

    Yet one of the prime reasons humans are likely to be device dependent for good is that they have always felt the need to be connected optimally and the new media (albeit device dependent) does inspire a feeling of connectivity that seems phenomenal in comparison to our recent past and that shows no signs of reducing for the moment.

    This book is about a kind of human learning, which has always existed as a social process that currently seems to have been augmented in this new media driven wave of connectivity. This book explores how humans make faster learning associations utilizing the new social spider that cuts across barriers of time and space and traps learning in its web of persistent conversations, intersecting life trajectories and lived experiences displayed in flowing narrative.

    We have built upon this framework of conversational learning by introducing conversations between readers after quite a few chapters and we hope it stimulates some readers who may even prefer to read the conversations prior to reading the chapters.

    Finally all our work in this book of bringing together insights from hitherto undocumented perspectives from all stakeholders in healthcare will evolve further in the “International Journal of User Driven Health Care,” that has been launched recently with the Information Resources Management Association IRMA to accommodate the enthusiasm of authors and readers that overflowed while preparing this book. It can be accessed from the IGI global web site and we hope to continue this journey with our audience through their active participation in the journal and invite their fresh perspectives and continued feedback.