Designing effective healthcare services for patients with fibromyalgia: mapping the digital healthcare journey

Chronic pain throughout the body is the defining feature of fibromyalgia which affects around 1 in 50 people. This complex condition is also associated with fatigue, memory problems and tenderness to touch. There are, however, no laboratory or imaging tests to support diagnosis and individuals often have many visits to their general practitioner and referral on to various specialists over several years before the diagnosis is made. Meanwhile the persistent pain and other symptoms have a major impact affecting daily activities. We have recently shown that people with fibromyalgia die prematurely (Macfarlane et al, 2017). Recent recommendations for managing fibromyalgia from the European Rheumatology Association (EULAR)(Macfarlane et al, 2017) concluded that the first line approach should be non-drug therapies, confirming results of Arthritis Research UK-funded studies we have conducted (Beasley et al, 2015). What patients, clinicians and researchers noted, when working on these recommendations, is that there is no current research on the best way to organise services to provide optimal care for persons with fibromyalgia and made this one a priority for future research.

Aims and purpose of study

We want to provide better services for people with fibromyalgia. An essential first step is an in-depth analysis of the patient journey and current patterns of healthcare use. This study forms part of a larger programme of work to inform design and delivery of a person-centred model of care for patients with fibromyalgia.

Methods
We will leverage pre-existing clinical and research partnerships to exploit the unique digital record linkage capability in Scotland and Wales; creating robust and generalisable representations of the care journey using digitally collected routine health care data in the electronic health record (EHR). This will allow us to see how many consultations patients have had in primary and secondary care, when these occurred, prescriptions and what treatments were given.
The Secure Anonymised Information Linkage (SAIL) databank (www.saildatabank.com) will provide data on persons who have been diagnosed with fibromyalgia and includes primary care data. In Scotland, consented data linkage with a wider group of people (survey participants already identified from a previous study who meet criteria for fibromyalgia) will enable linkage of self-report questionnaire information (already collected) to EHRs spanning community, ambulatory and hospitalised care (including related to mental health) and prescribed medications dispensed by community pharmacies).
Building on established health informatics methodology used in kidney research and translated across multiple linked datasets as part of our work for Farr Institute UK (Black & van der Veer, 2017, Sawhney et al, 2017b), algorithms will be created and tested to represent the key points in the EHR. Demographic, geographic and patient group variation will be explored. Secondly, we will use patient flow multistate modelling to create a formal representation of patients’ journeys, using natural language generation techniques to create illustrative narratives that will be used to generate patient centred illustrations representing common or key patterns in the patient journey data.

APPLICATION PROCEDURE:

This project is advertised in relation to the research areas of the APPLIED HEALTH SCIENCE. Formal applications can be completed online: https://www.abdn.ac.uk/pgap/login.php; You should apply for Degree of Doctor of Philosophy in Applied Health Science, to ensure that your application is passed to the correct person for processing.

NOTE CLEARLY THE NAME OF THE SUPERVISOR and EXACT PROJECT TITLE ON THE APPLICATION FORM. IF YOU DO NOT MENTION IAHS STUDENTSHIP ON YOUR APPLICATION THEN IT WILL NOT BE CONSIDERED FOR THE STUDENTSHIP. Applicants are limited to applying for a maximum of 3 applications for funded projects. Any further applications received will be automatically withdrawn.

Informal inquiries can be made to Dr Rosemary Hollick ([Email Address Removed]) with a copy of your curriculum vitae and cover letter indicating your interest in the project and why you wish to undertake it. All general enquiries should be directed to the Postgraduate Research School ([Email Address Removed]).