Working Together Creates Greater Opportunities

 

 

The GRC is a partnership of 40 organisations working to strengthening patient access to treatment and raise awareness about the importance of remission for people living with rheumatic diseases. Lillann Wermskog and Trine Dahl-Johansen have written an article for Spafo Norway’s member magazine “Spondylitten”, about the meeting:

Expanded Treatment Options

One of the goals of GAfPA and GRC is for the World Health Organization (WHO) to acknowledge the importance of ensuring that patients achieve remission and, simultaneously, have optimal access to treatment.

During EULAR in June, many of the coalition’s members gathered to discuss this important work. There, we had the opportunity to identify and explore the different challenges faced in our respective countries. A common challenge involves the definition of remission and what disease control actually means. We know, for example, that doctors and patients use different factors when assessing how effective a treatment is.

 

 

“Some patients may show improvement and symptom control for a period, but it does not persist. In such cases, we cannot talk about disease control or remission,” she explained.

Professor Carmona added that patients who respond well to treatment may achieve remission, meaning the absence of signs and symptoms such as pain and inflammation. But for a rheumatologist to say that a patient has achieved remission, clinical markers must support it.

“We must perform a thorough examination of the patient, and part of that includes using MRI and ultrasound to obtain the most accurate results possible. Many factors need to be in place for a patient to achieve remission, and in many cases, medication alone is not enough,” she said.

Patient Effort

Professor Carmona emphasised that patients should follow their treatment plan and participate in programmes such as patient education. “This can be difficult when a patient has catastrophic thoughts about their disease. That can influence treatment – and even undermine it,” she said.

Shared decision-making is extremely important in achieving the best possible results. “The collaboration between rheumatologist and patient is crucial for a patient to achieve remission,” she added.

 

 

This may be due to other existing conditions that biological treatment does not effectively address – for example, enthesitis (inflammation where tendons attach to bone). It was pointed out that while rheumatologists have extensive knowledge about treating inflammation, not all are equally skilled at finding solutions for other types of pain. This is crucial if the aim is to achieve disease control and remission.

Many organisations shared similar experiences regarding the identification and treatment of mental health challenges ­– something that affects many people living with RMDs. There was broad agreement that many patients need more comprehensive treatment than a rheumatologist alone can provide.

Need for Support

The alliance’s members need various forms of support to achieve this work at the local level. There are now 40 organisations working together to deliver information to decision-makers and patients in their respective countries.

It is important to examine national challenges so that countries with differing needs can be identified and supported. We know there are major geographical disparities worldwide, including access to medical care and medications. For this reason, becoming part of GAfPA and GRC is extremely meaningful, as they offer knowledge and tools that help us influence and inform health policy relevant to the needs of our patient groups. We gain access to a range of useful resources for reaching healthcare professionals and patients. This will help us disseminate knowledge about patient-centred care and new medical advances. This includes information materials that we, as patient advocates, can use free of charge – such as brochures, one-page summaries, and videos that simplify complex topics. Some of these materials are well suited for our member magazine Spondylitten, Spafo Norway’s newsletter, and our website www.spafo.no.  Additionally, they can be used in our information work on social media.

Using the Materials

Fact sheets and reports can be used as a foundation in meetings and hearings when we are in dialogue with health authorities and policymakers. This helps us clearly highlight the importance of better access to treatment and more patient-centric healthcare systems. Doctors and other healthcare professionals can use these materials to stay informed and to explain the value of remission, early treatment, or screening to their patients. Information materials are also valuable for seminars, courses, and workshops – for both patient representatives and healthcare professionals.

Patient education can help patients achieve better control of their disease. When patients have solid, reliable knowledge about how to best manage their condition, it leads to greater control over their health and improved quality of life. Going forward, there will therefore be an increased focus on patient education. As patient organisations, we will also gather patient stories to share at rheumatology congresses, in the media, and on social media.

 

 

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