Reviews

The winding tale leads you through a murky world of brothels, public needle exchange services, boardrooms and international conference centres. You will learn a new language on your journey, of MARPS (Most At Risk Populations), FSWs (Female Sex Workers) and Waria (male sex workers that are culturally considered to be female).

At every turn you will be shocked by chilling statistics and controversial comments. Surprisingly, the book is fairly humorous. It pokes fun at some of the governments’ initiatives, for example, peer outreach – in a competitive industry, like prostitution, where rivals have to covet each others’ clients in order to survive – whoever thought this could work?!

Some of the difficulties faced in accurate data collection are also revealed – it must be challenging to gather meaningful statistics when you are asking an intoxicated prostitute questions in a poorly lit nightclub in the early hours.

Having read Classical Chinese at University, Pisani first worked as a foreign correspondent in Hong Kong. She then undertook a Masters degree at the London School of Hygiene and Tropical Medicine, and entered into a career of Epidemiology.

Epidemiological facts are distorted by a smokescreen of money, power, politics, religion and the media

Transferring to Family Health International in Jakarta, Indonesia in 2001, Pisani became part of the “HIV surveillance mafia”, dedicating her time to building international surveillance systems to help develop HIV prevention programmes. What may have started off as a mere intellectual pursuit became an intensely personal battle as she met the faces behind the statistics, and fought to save her friends.

Pisani brings home the lesson that there is no purity in science. Epidemiological facts are distorted by a smokescreen of money, power, politics, religion and the media. It’s unfashionable and unpopular to dedicate money to prostitutes and junkies – it won’t win you votes in elections. This book is dedicated to realism. It is an abrasive and raw account of the battle between science and politics. It is a disturbing read, but a must for any enquiring mind.

This book was also reviewed by Dr Emily Lees, registrar at Lower Hutt in Wellington, New Zealand.

An entire novel about the epidemiology of one disease? To be read for fun? It’s enough to perturb even the most hardened of public health doctors, or so I thought, until I attended a talk by Elizabeth Pisani when she visited the Liverpool School of Tropical Medicine. During the hour that followed, Pisani captivated the audience with a passionate account of her views on the flaws in our international HIV/AIDS policies and the myths perpetuated by our current understanding of the epidemiology of HIV. This left me with a lot of questions, so it was with some trepidation that I picked up a copy of her book to learn more.

I need not have worried; the book contains both an entertaining and graphic account of Pisani’s extensive field research into the reasons for the spread of HIV and reminiscences of the time she spent working with people in the communities that we consider to be most ‘at risk’ of getting the disease. Though to many, (myself included), the premise of the book is a hard sell, Pisani’s background in journalism (she forged a career as a foreign correspondent for Reuters before becoming interested in epidemiology), and obvious enthusiasm for her subject, lend the book a conversational tone.

The book contains both an entertaining and graphic account of Pisani’s extensive field research into the reasons for the spread of HIV and reminiscences of the time she spent working with people in the communities that we consider to be most ‘at risk’

Pisani is adept both at telling the story behind the statistics and at putting her observations and arguments across in a convincing manner. She even manages to explain various study designs and their pitfalls in an engaging manner, making this book essential reading for medical students or anyone who regularly attends journal clubs.

One of the most interesting chapters of the book is its first, wherein the conflict between an epidemiologist’s duty to complete a study based on sound scientific principles is played against their desire to apply the results of their study in a way that can influence public health policy – a factor which some epidemiologists would consider to compromise their work. Pisani entered the world of epidemiology at a time when the AIDS epidemic was becoming common knowledge, and aside from the likely routes of transmission, little else was known on the subject.

It is fascinating to journey with her across Asia as she works for UNAIDS and other agencies designing studies to try and assess the prevalence of HIV/AIDS in the harder-to-reach populations, such as commercial sex workers. She also illustrates the ease with which the disease can spread via sexual networks and expunges some of the long-held myths about who is and is not at risk.

We experience the frustration Pisani and her colleagues feel at the difficulty that is to be found in presenting accurate statistics to governments in a way that illustrates the scale of the problem, and the trials in making these estimates public knowledge. More than that is the difficulty they have in attempting to convince the politicians (who are essentially temporary custodians of a country), to finance long-term programmes that will be unpopular with their voters.

We have achieved much in a short space of time, both in terms of our knowledge about HIV/AIDS and its spread, and the things that we can do to combat this

If given the choice between financing a school or a needle exchange, for example, it is likely that the public will vote for the politician backing the school, given the perception that drug users in some way ‘deserve’ any disease they may catch. No thought is given to the fact that in preventing the spread of disease there is the potential to save money that might later be spent on both a school and healthcare.

The book ends on a positive note. We have achieved much in a short space of time, both in terms of our knowledge about HIV/AIDS and its spread, and the things that we can do to combat this. There is much more HIV/AIDS-related funding available now than at any time in history, which needs to be used in sensible, evidence-based programmes for prevention and treatment. All of which brings us to an interesting end to the story – as treatment programmes become more successful, there are more people living a relatively normal life with HIV, meaning that there are more people surviving with the disease who are able to transmit it. (Clearly, people who are ill or who have died with AIDS are far less capable of transmission). Will this bring further crisis in our global management of the disease?

This book also reads very well in the context of current definitions of quality, where outcome, safety and experience are given equal weighting. Whilst outcomes and safety are familiar currencies that we easily understand, experience is less comfortable and much more alien to the medical community.

Indeed, we have been drawn into the world of “customer satisfaction” and have been persuaded that service delivery models aimed at high levels of patient satisfaction represent the desired goals in healthcare.

However, Fred Lee makes the case that it is so much more than this. Experience is about how you are made to feel: it is an emotional interface that relies on genuine human interaction with spontaneous and reflex elements that make it real and unique for each patient. He makes it clear that the generation of an experience is how you make lasting impressions and, if good, generates loyalty and trust.

Experience is about how you are made to feel: it is an emotional interface that relies on genuine human interaction with spontaneous and reflex elements that make it real

He reminds us that the single most important element to all successful human relationships, especially in healthcare, is compassion. Until we recognise, develop and reward compassion, we are destined to have services that may be good, but are vulnerable to veering into average or poor, consistently underwhelming in terms of experience.

Fred describes, for me, what was a confirmation of my own anxiety – that process redesign does not take into account this human element/emotion and, although it can deliver efficient care process, it cannot deliver great care because ultimately it does not create an emotional and therefore memorable experience.

If, like the Disney Corporation, we aspire to deliver excellence in our hospitals, we must create a truly unforgettable experience where compassion is a core value and all staff provide predictive, selfless care. I do believe that this book is the potential guide to a better land.

I believe if we were run by Disney that the values of compassion delivered by naturally talented and/or appropriately motivated staff would create an environment for a safe service with good outcomes, which would also deliver the elusive goal of a great experience.