Patients take universal health coverage into their own hands

150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world.

Patients’ groups, academics and health organisations will meet at the 7th Global Patients Congress, from 9-11 April, to share innovative best practice, research and to highlight specific examples of how to improve healthcare access across countries and contexts. Topics will include new approaches to community mobilisation, health professional-led innovation in disaster and conflict areas, strengthening health systems and patient involvement in drug development.

The adoption of the UN Sustainable Development Goals has pushed universal health coverage (UHC) – where all people receive the health services they need, without suffering financial hardship when paying for them – to the front of the health agenda. Every UN member state has agreed to ‘ensure healthy lives and promote well-being for all’ by 2030, which gives patients the timescale and the means to hold them to account. Many patients are taking the challenge of universal health coverage into their own hands by sharing new ideas which already improve healthcare in their communities.

Innovative approaches are improving patient experience, choice of treatment options and outcomes across the world. New examples are constantly surfacing: virtual patient communities now provide greater access to information and peer support, crowd-funding helps patients pay for the research they want to see, and social media helps to normalise different conditions and reduce stigma. These developments are changing the face of healthcare. Patients are more informed, more involved, and more engaged in working collaboratively with others to change health systems for good.

Jolanta Bilińska, Chair of the International Alliance of Patients’ Organizations, said:

‘History will judge governments against whether universal health coverage is achieved by 2030, but the responsibility lies with everyone involved in healthcare, including patients. Patients have an ethical and moral right to be involved in all decisions about their care, and bring new ideas which can’t be replicated by any other group. Patients are already changing healthcare with innovative approaches. Decision-makers at every level must do everything possible to listen to and embrace the patient voice.’

The International Alliance of Patients’ Organizations will host the 7th Global Patients Congress in London, 9-11 April. Patients and patients’ groups will share further examples of patient-led innovation in healthcare throughout the event. Find out more at www.iapo.org.uk/GPC2016

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🌍 This month in our #1Month1Study campaign, we highlight our “Living with systemic lupus erythematosus in 2020: a European patient survey”, published in Lupus Science & Medicine.

This large-scale study, conducted by Lupus Europe was led by Alain Cornet, Jeanette Andersen, Kirsi Myllys, Angela Edwards with the incredible support of Prof. Laurent Arnaud. The study analysed data from 4,375 patients across 35 European countries, providing one of the most comprehensive overviews of the burden of SLE in Europe from the patient perspective.

✅ Key findings include:

•⁠ ⁠A median diagnosis delay of 2 years, highlighting persistent gaps in early recognition.
•⁠ ⁠A high symptom burden, with a median of 9 symptoms per patient.
•⁠ ⁠Significant impact on education, employment, and daily functioning.
•⁠ ⁠Marked inequalities in access to care across countries.

📌 These data underline the importance of integrating the patient perspective into clinical practice, research, and health policy to improve outcomes in this complex disease.

doi.org/10.1136/lupus-2020-000469

😃 Stay tuned as we break down these findings throughout the month and explore what they mean for people living with lupus across Europe.

This study would not have been possible without the active support and dissemination of Lupus Europe National Members across Europe. A huge thank you to all National Members and to all who supported and disseminated the study, for making this possible for the lupus community.
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🌍 This month in o

🌈 The right to health is a basic human right. Everyone must have access to the health services they need when & where they need them without 💶 hardship.

😔 30% of the global population is not able to access essential health services.

#StandWithScience #WorldHealthDay #WHD2026
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🌈 The right to he

🚀 #LupusGPT & #EasyLupus are currently offline as we continue improving them.

🛠️You thought they couldn’t get better? We know they can, & we’re making it happen.

In the meantime, for reliable, multilingual lupus information👉 lupus100.org/

💜Thanks for your support!
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🚀 #LupusGPT & #Ea
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