PAtient-centred Care for Fibromyalgia: New pathway Design (PACFiND)
Duration: 01 February 2019 - 31 January 2024
Funder: Versus Arthritis
Chief investigator: Professor Gary Macfarlane
Co-chief investigator: Dr Rosemary Hollick
Study Co-ordinators: Marcus Beasley, Laura Moir
Fibromyalgia is a common condition with symptoms of pain, fatigue and sleep disturbance. There is not much evidence on the best way to organise health services for fibromyalgia. Patients are dissatisfied with current services and believe no-one takes responsibility. This project aims to improve healthcare services for patients with fibromyalgia. The hope is to provide timely diagnosis which currently takes many years. We also hope to ensure everyone has access to effective treatments, and this will lead to better outcomes.
We will gather information from patients about their current healthcare and work with health professionals to understand how services are organised. We will then identify what better care for patients with fibromyalgia looks like. We will also estimate the benefits and costs of existing and alternative care models.
By the end of the study we will have developed a new model of care for people with fibromyalgia. The model will prioritise what people with fibromyalgia think important. It will be cost-effective and ensure better outcomes for patients. We will develop a plan for how the service can be put in place to ensure higher levels of patient satisfaction across the country. We will also produce an online resource offering information and support to patients via Healthtalk.
- Partner locations
As part of the PACFiND study, we will be producing a section on the Healthtalk website. We will interview people to find out their experiences of having fibromyalgia. Summarised findings from these interviews will be available on the website, illustrated with video and audio extracts, to allow others to hear about the condition.
- Data science
We will use electronic health records to map the journey of fibromyalgia patients through the health system. This will allow us to see how many consultations they had with both GPs and specialist services. We will be able to see when consultations occurred and what prescriptions and treatments were given. From this we can estimate the cost to the NHS of caring for people with fibromyalgia.
For further details about our data linkage policy, see the 'Privacy notice for data linkage' section below.
- Healthcare professionals survey
We conducted a survey for NHS health professionals who see patients with fibromyalgia in order to map NHS services for people with fibromyalgia.
Healthcare professionals in England, Northern Ireland, Scotland and Wales were invited to take part. This short survey was sent to various healthcare providers and practitioners, who were encouraged to share the questionnaire appropriate colleagues.
This survey is now closed.
- Patient survey
We conducted a survey for people aged 16 years or older diagnosed with fibromyalgia living in the UK in order to map non-NHS services for people with fibromyalgia.
The purpose of this survey is to find out what non-NHS services and treatments are used by people with fibromyalgia. Non-NHS services include healthcare delivered by private organisations / professionals, voluntary organisations and community organisations. The responses received will help understand services outside the NHS people with fibromyalgia use.
This survey is now closed.
- Patient partners
All stages of the PACFiND study will include input from patients. As well as patient collaborators on the study management team other study tasks will involve patient partners. These tasks include development of questionnaires, interpreting findings, and contributing to public engagement.
If you are a fibromyalgia patient and would like to help, please email us at firstname.lastname@example.org.
Details about how we handle your personal information can be found below in the 'Privacy notice for patient partners' section below.
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- Who we are
Work package leads
- Professor Louise Locock (Work Package A Lead)
- Professor Corrinda Black (Work Package A3 Sub-lead)
- Professor Catherine Pope (Work Package B/C Lead)
- Dr Nicky Wilson (Work Package B/C Lead)
- Professor Paul McNamee (Work Package C Lead)
- Simon Stones (Patient Representative)
- Debra Dulake (Patient Representative)
- Contact details
Health Sciences Building, Level 1
University of Aberdeen
- Privacy notice for patient partners
This notice explains how the University of Aberdeen handles your personal information when you register your interest in patient and public involvement (PPI) activities that take place within the Epidemiology Group and the Aberdeen Centre for Arthritis and Musculoskeletal Health.
Who we are
The organisation responsible for your personal information in terms of data protection legislation is the University of Aberdeen.
If you have any questions about the University’s handling of your information, or your rights under privacy laws, you can contact the University Data Protection Officer in the following ways:
Information we collect and use about you
You will have provided us with information such as your name, telephone number and/or email address and areas of interest for taking part in PPI activities.
Why we process this information, and our lawful basis
We collect and use your personal information with your consent in order to send you information about taking part in PPI activities that will be used to conduct academic and scientific research with researchers at the University of Aberdeen.
The University is authorised to undertake research under powers provided by the Universities (Scotland) Acts, and also undertakes research in the public interest
Disclosing your information
We will not disclose the information you provided on the sign-up form to any other organisation, other than when required do so by law or with your consent (either verbal or written).
The external suppliers we use for IT support may have access to your personal information in order to provide that service to the University. Our third-party supplier arrangements are regulated by contracts designed to protect the information and limit the way it is used.
How long your information is kept
We will keep information about you for a maximum of 2 years after your last contact with us for PPI activities.
You have the right to withdraw your consent at any time for the University to continue to process your information. If you wish to withdraw consent, please contact us at the following address:
University of Aberdeen
You also have rights to obtain a copy of your personal information, and to ask us to correct inaccurate or incomplete personal information. Under certain conditions, you can ask us to restrict the way we use your personal information, erase your personal information and object to the University processing your personal information. These rights depend on our lawful basis for processing your personal information. This means we may not be able to comply with your request in every case. If we cannot do as you ask, we will always reply to you and explain our position.
There is no charge to make a request, but we may need evidence to confirm your identity before we respond in full.
You can ask about your privacy rights or make a request about your personal information by contacting the University Data Protection Officer at the following address:
Directorate of Marketing and Student Recruitment
University of Aberdeen
If are dissatisfied with the way the University has handled your personal information or dealt with your data protection issue, you have the right to lodge a complaint with the Information Commissioner. The Information Commissioner’s Office can be contacted via their website at www.ico.org.uk/concerns.
- Privacy notice for data linkage
The University of Aberdeen is the sponsor for this study based in the United Kingdom. We will be using information from you in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. The University of Aberdeen will keep identifiable information about you for a minimum of 10 years after the study has finished. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.
The University of Aberdeen will collect information from you for this research study in accordance with our instructions. The University of Aberdeen will use your name, date of birth and contact details to contact you about the research study, and make sure that relevant information about the study is recorded for your care, and to oversee the quality of the study. Individuals from the University of Aberdeen and regulatory organisations may look at your medical and research records to check the accuracy of the research study. The only people in the University of Aberdeen who will have access to information that identifies you will be people who need to contact you for the study or audit the data collection process.
The University of Aberdeen will keep identifiable information about you from this study for a minimum of 10 years after the study has finished. The University of Aberdeen will collect information about you for research purposes from, for example, Information Services Division (Scotland), the NHS Central Register and other NHS organisations. This information will include your name, date of birth, Community Health Index (CHI) number/NHS/hospital number, contact details and health information, which is regarded as a special category of information. We will link the above information to the survey information gathered on this study for research purposes.