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PAtient-centred Care for Fibromyalgia: New pathway Design (PACFiND)

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PAtient-centred Care for Fibromyalgia: New pathway Design (PACFiND)

PACFIND - Designing new services with patientsDuration: 01 February 2019 - 30 September 2025
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.

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 is important. It will be 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.

The study has also produced an online resource offering information and support to patients via Hexi which is now available at https://hexi.ox.ac.uk/Fibromyalgia/overview including interviews with people to find out their experiences of having fibromyalgia. You can view a short film from our interviews with people across the UK who live with fibromyalgia by clicking the image below (link opens in a new window). We hope it will help staff and patients think about how they could improve care locally.




Further information

What has the study found so far?

The following outputs have resulted so far from the study:

Healthcare survey results

We ran a survey amongst over 2000 healthcare professionals and patients to understand more about current services for people with fibromyalgia, and what types of healthcare people with the condition would prefer. You can view a summary video of the results below:

Video presentation: Impact of Fibromyalgia on Work: Informing Strategies for Enablement

Dr Rosemary Hollick produced a short video presentation for the 2022 BSR Conference in Glasgow. You can view the presentation below:

Hexi online resources

As part of the PACFiND study, we have produced a section on the Hexi website (https://hexi.ox.ac.uk/Fibromyalgia/overview ). We interviewed people to find out their experiences of having fibromyalgia. Findings from these interviews are available on the website, illustrated with video and audio extracts, to allow others to hear about the condition. To date these pages have been viewed over 40,000 times.

Supporting conversations about healthcare improvement

You can view a short film from our interviews with people across the UK who live with fibromyalgia by clicking the image below (link opens in a new window). We hope it will help staff and patients think about how they could improve care locally.

Articles

The following articles have been produced from PACFiND research so far:

Partner locations

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 pacfind@abdn.ac.uk .

Details about how we handle your personal information can be found below in the 'Privacy notice for patient partners' section below.

Study team

Chief investigators

Patient representatives

  • Debra Dulake
  • Des Quinn

Research team

Latest news

September 2024

  • Dr Martin Stevens presented the PACFiND project to Versus Arthritis on a visit to the University of Aberdeen campus.
  • Dr Martin Stevens & Dr Rosemary Hollick presented the PACFiND study to the NHS Wales Managing Persistent Pain in Adults Spotlight Event. The audience of clinicians and policy makers were highly engaged and supportive of the PACFiND project which led to several further discussions about implementation of the results.

October 2024

  • With data collection for the PACFiND project now completed, we are now in the process of drawing conclusions from the various studies we have conducted. To bring the project together members of the study team and patient partners will be meeting in November 2024 to collate our findings into a PACFiND toolkit. The toolkit will be aimed at people who are setting up a fibromyalgia service. The toolkit will bring together the key components that a service could use. There is no fixed model that each site will follow but our toolkit will advise as to the key components they can include.
Newsletters

We will be producing newsletters throughout the course of the study to keep you up to date on the latest happenings. You can download copies of these newsletters here:

Data linkage

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.

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.

Your rights

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:

Epidemiology Group
University of Aberdeen
AB25 2ZD

Email: epippi@abdn.ac.uk

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:

UK Team
Directorate of Marketing and Student Recruitment
University of Aberdeen
AB24 3FX

Email: ukteam@abdn.ac.uk

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.

You can find out more about how we use your information at https://www.abdn.ac.uk/privacy or by contacting the University's Data Protection Officer on dpa@abdn.ac.uk .

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.

Contact details

Key Contacts

Address

PACFiND Study
Health Sciences Building, Level 1
University of Aberdeen
Foresterhill
ABERDEEN
AB25 2ZD

Email

pacfind@abdn.ac.uk

Twitter

https://twitter.com/PACFiND

Facebook

https://www.facebook.com/groups/3736020446423097