The patient's journey: travelling through life with a chronic illness

For many years we have been keen to bring patients' voices into the BMJ by publishing personal views and commentaries by patients. Now we are starting a new intermittent series of longer articles describing patients' experiences of living with chronic disease. The first of these articles is published today,1 and we hope that readers will send us more along the same lines.

This journey describes the challenges of living with Parkinson's disease, and is written by Mary Baker and Lizzie Graham of the European Parkinson's Disease Association. The article started life as a speech by Mary Baker. It has no formal references and has a rousing and almost mythical style, following a long tradition of patients' tales.2 Subsequent articles may conform to the same style and structure but do not have to (see box).

Journey articles should encompass how it feels to face a difficult diagnosis and what that does to relationships and quality of life. Inevitably and importantly, they will underline the need to treat patients, rather than diseases, and to understand the impact such journeys may also have on patients' carers and families. Above all, these articles should tell doctors what really matters to patients and what help they need to make the most of their lives. As Aldous Huxley said, “Experience is not what happens to a man; it is what a man does with what happens to him.”3 Giving patients time and space to talk about what happens to them might help to improve their experiences of illness.

The variety of lessons to be learnt from such journeys is almost as great and diverse as the range of long term experiences they may describe. Patients and carers must be actively and directly involved in the preparation of the articles. We do not believe that doctors and journalists acting as proxies for patients will be able to tell sufficiently convincing stories.

It would be interesting, however, to see a journey described both by a patient or carer and by clinicians who have helped that patient, perhaps in parallel articles and without comparing notes. And it would be interesting, too, to see two or more comparable journeys described by the patients who made them, or their carers, for that might show the individuality and uniqueness of each person facing the same challenge.

The BMJ is beginning this new series of articles for two main reasons. Firstly, this is a response to the growing recognition, certainly within the United Kingdom, that health services that have tended to focus largely on acute or life threatening illnesses must do more to improve the diagnosis, treatment, and management of chronic diseases. This is an imperative driven partly by an ageing population and a consequent increase in the incidence of chronic illness4 but also by the realisation that the quality of people's lives may be at least as important to them as the lengths of their lives.

Secondly, we hope that this new series will develop the BMJ's strategy to include patients in its work. Last year, with Mary Baker's assistance, the then editor, Richard Smith, established the BMJ's advisory group for patients. This group comprises more than a dozen people representing a wide variety of patients' organisations, which provide support and information about many different diseases.

Meeting only occasionally, the group is an essentially virtual forum whose members are actively encouraged to comment on the BMJ and on issues affecting patients, and to become involved in the journal's work. Some of this work leads to publication, and some of it is internal and editorial.5 For instance several of the group's members have joined the weekly rota to critique each issue of the BMJ after publication.

This series of patient journeys will, we hope, further promote the importance of patients' voices and of narrative based medicine. We believe that doctors should be able to draw on all aspects of evidence—case based experience, the patient's individual and cultural perspectives, and the results of rigorous clinical research trials and observational studies—to reach an integrated clinical judgment.6 We will be pleased to hear your views on this first journey article and receive others co-written by any combination of patients, patient advocates, carers, and clinicians.