The National Rheumatoid Arthritis Society Mapping Project

19/12/06 : Ailsa Bosworth, NRAS Chief Executive

If you look at a medical flow chart which plots the ideal route for patients from presentation of symptoms at the GP surgery through to diagnosis and on-going treatment, it is very clear, short and straightforward. However, our experience of listening to people with RA, is that their journeys through health care are often very different to that ‘medical’ pathway which shows what should happen to someone ‘in an ideal world’. So, we embarked on a ‘mapping’ project to effectively map or plot the journeys of 24 people with a diagnosis of RA with rheumatoid factor positive, of up to a maximum of 3 years to see what a real world ‘patient map’ would look like. We also wanted to find out what the costs to both the NHS and the individual person would be.

We worked on this project with Susan Oliver , our chief nurse advisor, Ivan Lax and Mara Airoldi of Catalyze Ltd, who undertook the interviews and created the ’maps’ and a multi-disciplinary Mapping Project Advisory Board who effectively reviewed everything we did. The project is in fact still on-going as we are currently writing up the whole thing with Sue Oliver and will be producing a full report by the end of the year, and hope to publish the work in a peer review journal. As a consequence, there is a limit to what I can tell you now, so this is just a snippet to outline the principle of what we have done, and we will be able to publish a summary of the results in the next newsletter.

We have found through listening to patients’ stories via our helpline and talking to NRAS members we meet around the UK that their journeys through healthcare are diverse and do not always recall positive experiences, particularly in the early phases of their condition when anxieties and needs are high. Significant changes are often required to lifestyle, environment and behaviours and personal costs can be significant. Exploring these views, it appeared that chance often plays too great a part and that in many cases people have eventually stumbled across the right pathway to care rather than taking a pre-planned path. This may be based upon poor patient knowledge of the clinical decision making processes. However, this raises some interesting issues in relation to understanding the process and knowing how to make the important and strongly advocated 'patient choice' decisions. It is not entirely clear how vulnerable groups can become empowered in the ‘choice’ agendas when there are specific barriers such as numeracy, literacy or cultural issues that mean they are already receiving sub-optimal care as they travel through their healthcare journey.

For healthcare professionals the individuality of patients' needs have to be combined with the development of standards and guidelines that support consistent healthcare decisions, whilst enhancing transparency of process and equity of care.

This study set out to explore the real experience of individuals with RA and attribute costs incurred by the individual and the NHS as a result of the various pathways taken. It has been advocated that process mapping can reveal key system failures and a process such as conducted on this project can reveal the limitations of the current healthcare systems. Mapping was initially used in industry to explore bottlenecks in production and aid decision making to match capacity with demand. More recently these principles have been applied in healthcare to follow the patient’s journey for specific treatments or episodes of care. Mapping patient journeys has recently revealed some powerful insights into the patient experience and disparities between perceived and actual standards of care provided.

In order to explore the patient journey in RA this mapping project was designed to explore the NRAS Members’ experience during the first three years of their journey through the healthcare system. This was not a clinical trial, nor an audit but a mapping of the patient’s processes from the time of onset of symptoms that caused them to seek medical advice, to the end of their first three years of living with their condition.

The findings are very interesting and we hope that further research will be spawned from the results of our mapping process, delving deeper into some of the many different aspects of ‘the patient journey’. More to follow!

We are grateful to Roche Products Ltd. for an educational grant which enabled us to undertake this work.

Click here to download the full version of The Mapping Project. (13Mb PDF)
Please note this is a large file so broadband is recommended.