The first project
How to find out what matters most to patients with rheumatic and musculoskeletal diseases?
To answer this question, we have decided to work with the James Lind Alliance (JLA) initiative and conduct the first project with them in Switzerland.
The JLA is a British non-profit initiative, established in 2004. It brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise evidence uncertainties or unanswered questions they would like answered by research.
Evidence uncertainties are questions about healthcare that cannot be answered by existing research. These might be questions about particular treatment options, methods of care, or diagnostic tests.
Therefore, PSPs aim to address the mismatch between what researchers choose to research, or funders support, and what patients, carers and health professionals actually want to know. They provide an important and valuable opportunity for patients, as the end users of research, to help shape the research agenda.
Our work will raise awareness of what really matters to the people who are affected by disease and illness in their everyday lives.
Literature and links
Learning about rheumatic and musculoskeletal diseases
There are endless sources of information on the internet – but which are reliable and understandable to laypersons? As a first source we recommend the patient associations of the disorder you are interested in. These are listed below.
The Rheumaliga has an A-Z of rheumatic disorders in French and German and is the leading patient organisation in Switzerland for all rheumatic and musculoskeletal disorders.
The UK research charity Versus Arthritis also has an A-Z of rheumatic and musculoskeletal disorders in English.
If you need support as a sufferer, or a carer, it is best to get advice from a patient organisation.
The leading organisation for all rheumatic and musculoskeletal diseases is the Rheumaliga. It provides advice, offers courses and organises events, helps you to find specialist support and publishes much helpful information. It is organised in regional groups covering the whole of Switzerland.
The Swiss Fibromyalgia Association gives help and support those affected and their families, publishes information and raises public awareness of the disease, stimulates medical and pharmaceutical research to improve treatment methods.
The Swiss Psoriasis and Vitiligo Society (SPVG) provides information on issues related to psoriasis and vitiligo, promotes cooperation, represents the interests of its members, promotes regional groups and activities.
VASAS (VASculitis Association Switzerland) connects people suffering from Takayasu Arteritis (TAK), Giant Cell Arteritis (RZA) or ANCA Vasculitis (AAV), their relatives and caregivers, as well as people who are professionally and/or personally interested in these diseases.
Citizen Science and Patient involvement
The Citizen Science Center Zurich is run jointly by the University of Zurich and ETH Zurich. The mission of the Center is to support and promote the collaboration of academic scientists and the general public to implement co-created Citizen Science projects.
The organisation Was Habe Ich helps patients to understand their medical reports. It is a volunteer online service offered by hundreds of medical professionals free of charge. The objective is to improve communication between patients and doctors and thus improve health care.
Easy Access Medical Literature
The British Medical Journal (BMJ) publishes many resources about working with patients to improve healthcare and has a strong strategy to promote patient-centred content. In particular the BMJ Opinion Patient Perspective series features articles written from the viewpoint of patients.
The patient research library offers data, research results and reports, with a focus on the UK.
Recommended scientific literature on Patient engagement in healthcare and medical research
SCTO (Swiss Clinical Trials Organisation) has published an overview of patient participation in Switzerland: Regulatory Affairs Watch, Issue 6, 28 October 2021 "Bringing patients' and the public's voices into human research" Link zur Website.
Boivin, Antoine; L'Espérance, Audrey; Gauvin, François-Pierre; Dumez, Vincent; Macaulay, Ann C.; Lehoux, Pascale; Abelson, Julia (December 2018). "Patient and public engagement in research and health system decision making: A systematic review of evaluation tools". Health Expectations. 21 (6): 1075–1084. doi:10.1111/hex.12804. PMC 6250878. PMID 30062858
Maarten de Wit, Cyrus Cooper, Jean-Yves Reginster, on behalf of the WHO-ESCEO Working Group Practical guidance for patient-centred health research, The Lancet, Volume 393, ISSUE 10176, P1095-1096, March 16, 2019, DOI https://doi.org/10.1016/S0140-6736(19)30034-0