The Resourceful Patient

Gentle reader

'Gentle Reader' - with these words the 18th and 19th century author would self-consciously remind readers that what they were reading had been written by somebody who wished to guide them through the text. Reading is now so widespread and common, it is assumed that readers will know how to cope with a book and do not need to be told what to expect in the chapter or how to feel about it. In his set of essays on The Order of Books, the French writer Roger Chartier emphasises the ephemeral task of the reader and the responsibility that writers felt to guide them through their work. The early authors even gave consideration to the physiology of reading, described by Adrian Johns in The Nature of the Book, but most authors now expect readers to be able to plunge into a book, and to use the index, footnotes and references as familiar landmarks in the cartography of reading.

However, this book, although it appears to be a book like any other, such as The Oxford Textbook of Medicine, or Landscape and Memory by Simon Schama, is not quite what it appears and therefore, Gentle Reader, we feel a responsibility, which you may find paternalistic, to say a little bit about the book and how it can be read.

The references to articles provide hyperlinks from the Web site of the book either to the wonderful Generic Medical Journal Web sites, for it, the paragon of journals, gives access to full text, or, when the references are to articles in other journals, to abstracts provided by PubMed, one of the wonders of modern medicine.

Is it a book or a Web site?

The writing of this book was based on a premise unsupported by evidence - the premise being that the creation of a book that was conceived as hypertext could be converted into linear text and vice versa. Linear text is now very familiar, not surprisingly because the earliest written text, the papyrus, was a beautiful example of a linear text (the longest surviving papyrus is about thirty feet long). People are accustomed to writing linear text and the very recent advent of hypertext, namely the ability to order a set of documents not in a long line but in a network, linked using browser software, either on the Web or on a hard disk, is not so familiar and the translation from one to another is often difficult. Our prior assumption was that if we conceived of a text that would be read on the World Wide Web, such a text could both be presented on the Web and also very easily converted into linear text for printing.

This was the initial assumption and much of the text was already written when one of the team asked, 'What is the difference between an e-book and a Web site? Surely it is just a large-scale Web site?'

This gave the writer considerable food for thought, but the answer that eventually emerged was that an electronic book was one that was designed not only to be read in a linear fashion but also, if desired, to be printed out as a book, whereas a Web site was never intended to be printed. We therefore arrived at the decision to create a hybrid book using both electronic means and paper.

Creating an e-book

There has been an explosion of e-books, stimulated by authors such as Stephen King. However, e-books vary in layout, and we propose to create two types of e-book.

The whole of the text will be delivered on the Web, but cut up into small pieces because Jakob Nielsen, one of our gurus, has found that people actually don't mind clicking but they hate scrolling. We are planning, therefore, Gentle Reader, to make the whole of the book available on the World Wide Web, but in small gobbets.

We are also making this book available as an e-book, able to be downloaded to read using, for example, Microsoft Reader.

This is a small example of a long debate in which the e-book concept and the Web site were confused, then distinguished, then confused again, but they are now, if not clarified, at least able to give us a working basis for this, our first attempt to create a hybrid book. The electronic version of the book will in fact be available in two forms - free in very small pieces and as a downloadable continuous file.

The hybrid book

In addition to having two electronic versions of the book, we also decided to have a printed version (based on the principle that what distinguished an e-book from a Web site was the ability to print it), and we plan to do this using print-on-demand technology.

Conventional publishing has been hamstrung for many years, particularly in the publishing of monographs, by the agonising consideration given to the length of the print run. With old technology, the set-up costs were so great that it was necessary to have a long print run to justify the printing costs. When, however, you had a long print run, you also had a lot of books, which had to be moved in a lorry to a warehouse, stored, and then re-shipped to the bookshops for as long as the warehouse manager was willing to maintain them. When that point was reached, along came the pulper. If the book was very successful, a second edition would be commissioned, usually after a lapse of several years.

With print-on-demand technology, however, it is possible to change the book every year or every month or every day, and the concept of an edition becomes irrelevant. For this reason, each version or printing of the book is dated, and the date indicates the moment in time at which the last change was made.

The potential of print-on-demand is considerable. If, for example, you have a workshop coming up with seventeen people attending, print-on-demand allows the book to be updated and then for eighteen copies to be printed, seventeen for the delegates and one for the workshop organiser. If, as a result of the workshop, the author wishes to change the book, it can be done simply and electronically, but no more need be printed until the next individual or group places an order.

References and further reading

We have decided to adopt a new approach to references and further reading, making use of new technology.

In the printed book, we have underlined the names of books, the names of authors, and the titles of the articles in the reference section. In addition, certain bits of the text are underlined.

Wherever text is underlined, you can find a Web link on the book's Web site. For example, when we are referring to the book by David Halberstam called The Best and the Brightest, David Halberstam is underlined and then The Best and the Brightest is underlined. If you read the book beside a computer linked to the Web, you can either find the text on the Web site or look at the book list. The David Halberstam link takes you to an essay on this wonderful writer, the title of the book takes you to the relevant page in Amazon.

Those bits of the text that are underlined offer you links to other Web sites that we have found which we believe help illuminate the ideas in the book. These Web links will change and grow as we find more resources, but, due to the glory of print-on-demand, each printed version of the book will relate to the Web links given on the Web site. We have not given Web links as URLs because the writer in particular is relatively kack-handed and finds it impossible to translate long URLs from written text to his Internet Explorer bar. We have assumed that the reader of this book would have easy access to the Web, either to look at the Web site while reading the book or to make a note of Web sites to visit later.

As you like it

We are therefore, Gentle Reader, offering a number of options. You can:

  • read the book on your knee or on the train, clutching the familiar paper and turning the familiar page, or
  • read the book sitting beside a computer linked to the World Wide Web allowing you to check the references or read in more detail the background evidence to the proposition in the book, or simply explore the Web sites covering concepts or people that stimulate your interest, or
  • buy and download the e-book to read on your lap- or palm-top using Microsoft Reader or the other software options that are available for reading e-books, or
  • roam about the Web site seeing the text, and the links.

Whichever route you choose, Gentle Reader, we hope you find the ideas in the book of interest. The construction of the book has been an adventure for all of us. Undoubtedly we have made mistakes for we could find no template to follow and no guidebook to the writing of electronic books. In three years' time all of this effort may turn out to be a great mistake because the media may develop in quite different ways and our concept of an e-book may be redundant.

However, we hope that the content of the book will be more relevant in three years' time as the need for a new paradigm in medicine and healthcare is seen to develop.

The 21st century paradigm

Of central importance in this process of transformation is the transformation of the patient's part in healthcare.

The writer of this book is a 57-year-old male. At present, if he were to be admitted to hospital with a myocardial infarction, survive and be discharged, the hospital's primary focus for communication would be his general practitioner, an excellent GP called Dr McPherson. It is recommended by the Department of Health that, in future, the writer should also receive a copy of the letter to Dr McPherson. Dr McPherson will be told that the writer would benefit from aspirin and beta blockers and than an appointment should be arranged with the Cardiology Department. In a year's time Dr McPherson would probably check to ensure that she has done this, and in two year's time she may well be paid according to how well she has done this. This is surely completely impossible to sustain. Surely the writer should be sent a letter by the hospital telling him that he needs aspirin and beta blockers, and giving him the postal address and the e-mail address for the Cardiology Department, so that he can arrange an appointment? He could be told, of course, that Dr McPherson and the practice nurse would be very pleased to discuss these options with him. He could be told that Dr McPherson would be willing to take over complete management of his care if he feels overwhelmed by the anxiety and responsibility, as some people are, no matter how well-educated.

At present it is assumed that the doctor is the responsible person, and the patient incompetent and in need of care. As the book will argue, this assumption is wrong, and it creates an unsustainable pressure on healthcare professionals. Even if only 10% of patients would like to share decision-making - and the evidence is that the proportion would be much higher in certain age and social groups - the basic premise should be that the patient is competent, not that the patient is incompetent. Even when groups of patients who might be thought to be incompetent are considered, it cannot be assumed that everyone is incompetent. Furthermore, even though only a minority of patients wish full control or shared decision-making, the majority of patients would like more information and involvement than they get at present.

This book is committed to promoting the concept of the resourceful patient, namely the patient who is not only aware of his rights but is also made aware of his responsibilities and is willing to accept them, provided, of course, that he is given the resources to do so.

The book is in four parts:

  1. the first describes the rise and fall of the medical empire
  2. the second part describes what doctors do all day, because a failure to understand this often leads to confusion and conflict
  3. the third part describes the resources that patients need in order to share responsibility and assume more control
  4. the fourth part describes the patients, clinicians and organisations of the 21st century when the new paradigm is in place

Gentle Reader, read on.