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Rare Diseases And Health 2.0: Interview With Book’s Editor

September 15, 2014

This is the first Blog Post in a continuing series that presents and reviews books in the rare disease and orphan drug space.

A book, “Rare Diseases in the Age of Health 2.0 (Communications in Medical and Care Compunetics” is published in November 2013 by Springer. One of the Co-Editors of the book is Dr. Rajeev K. Bali, director of Karmah Management and Research Ltd in the U.K.  His main research interests are in healthcare and clinical knowledge management. The book focuses on various factors associated with rare diseases, and the role and impact that different health 2.0 information technologies have on them.

The Orphan Druganaut Blog had a chance last year to talk with Dr. Bali about the book.

What was the goal and inspiration in putting together this book on rare diseases?

Thank you for arranging this interview on your blog.  Some background to this book project may be useful.  I had already published eight books before and had no immediate plans for further texts.  Then, one of my co-editors, Lodewijk Bos – President of the ICMCC (The International Council On Medical & Care Compunetics) – contacted me regarding this book project.  Once I heard the words “rare disease”, I immediately thought of bringing in my good friend Simon Ibell (in Toronto, Canada) as a co-editor as well another good friend, Dr Chris Gibbons, a medical doctor and academic at the Johns Hopkins Urban Health Institute in Baltimore, USA.  The editorial team had been formed.  Simon is the founder and CEO of the iBellieve Foundation, an organization dedicated to finding a cure for Mucopolysaccharidosis II (MPS II or Hunter syndrome) from which he suffers.  Dr Gibbons is a leading global expert in health inequalities and disparities.

So we now had experts in global health knowledge management (myself, looking at “gaps” in health knowledge), patient empowerment (Bos), rare disease patient advocacy (Ibell) and a clinician with research interests in inequalities and disparities (Gibbons).  After detailed discussions, we decided to depart from a conventional textbook and aim for a book that was accessible (easy to read) and suitable for health professionals, academics and rare disease patients (and their families).  This was not an easy task – one book for everyone?

We contacted experts from around the world – incidentally, this was another editorial decision: to make the book truly international, not just US-centric.  We split the book into the four topics : Rare & Orphan Diseases, Health 2.0, Patient Perspectives & Empowerment Issues, and Closing Gaps-Promising Research & Future Considerations.  The team additionally chose to intersperse chapters with patient vignettes (short stories) which have proved to be immensely powerful in explaining family experiences with a variety of rare diseases.

In your book, how do you define Health 2.0?

We have explained the term as the contemporary use of web-based technologies (blogs, Facebook, Twitter, YouTube etc) to bring together health professionals and the patient community.  The power behind these networks is truly inspirational.  The book contains detailed information about Health 2.0 and its applicability to the rare disease community.

What audience is the book intended for – academic, business, rare disease patients, international?

Hopefully, everyone.  Our chapters come from health professionals, academics, Big Pharma and patient-based organizations.  Most importantly, we have valuable patient input in the form of chapters and our powerful vignettes.  We trust that the book is easy to understand and we asked all contributors to keep technical and medical language to a minimum.  We were very pleased to receive chapters from such entities as Shire Human Genetic Therapies, the National Institutes of Health (NIH), Health 2.0, the National Organization for Rare Disorders (NORD), the Canadian Organization for Rare Disorders (CORD) and the Rare Genomics Institute.  We were particularly pleased to secure an insightful foreword from Dr. Stephen C. Groft, Director of the Office of Rare Diseases at the National Institutes of Health (NIH).

What is the future for rare diseases in the age of Health 2.0?

I personally think things are looking up.  Rare disease patient communities are of course very engaged in their conditions and useful technology can help to bring these groups closer together.  These communities can now rapidly connect with patients with similar conditions in different continents, something that was almost unimaginable only a few years ago.  The nature of rare diseases is such that patients, and their families, become leading authorities on that disease – there are so few experts around.  Knowledge IS power.

 What surprised or moved you about the personal stories from rare disease patients?

I think the sheer diversity of the stories which, despite their differences, always had a common theme: the need to effectively share experiences.  Coming together, via technologies, offers immense possibilities for future rare disease management.  I had the great privilege of meeting several of the vignette and chapter authors in person.  Getting to know them personally and learning more about their experiences was a humbling yet very rewarding experience.

What do you see as the positive and negative influences of Health 2.0 information technologies on rare diseases? 

I have spoken about the positive aspects already.  The only negative that comes to mind is the danger that newly diagnosed patients view online information as a sole means of diagnosis and way forward.  This danger is present in almost all internet forums though so the same caveats need to apply to Health 2.0.  We were careful to include a chapter on the importance of health information literacy in the book.

Does the book touch on the topic of privacy issues? If so, what privacy issues should the rare disease patient be aware of?

We do.  However, as we wrote in the book, most patients and their families couldn’t care less about such issues – they want progress and they want it NOW.  There is already a paucity of funding for most rare diseases accompanied by the pre-existing bureaucracy in R&D.  Communities are encouraged to use patient registries which, when correctly used, can track patient welfare and detect useful patterns for the future.

 Thank you Dr. Bali for your time in discussing your publication with the Orphan Druganaut Blog.  

My pleasure.  Thank you again for your kind invitation.  If anybody would like to find out more, they can contact me on r.bali@ieee.org.  You can also download a book flyer here.  You can take an inside peek at the book here. The editors decided to donate all proceeds of the book to the iBellieve Foundation.

Please Note“Book Cover” courtesy of Springer.

Copyright © 2012-2014, Orphan Druganaut Blog. All rights reserved.

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