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On Jan 20th, in Paris, the Organization for Economic Co-operation and Development (OECD) held a Forum on the Future of Health, with the tag line of “People at the Center”.  The Organization provides a setting where governments can compare policy experiences, seek answers to common problems, identify good practice and coordinate domestic and international policies.  Generally, the OECD is associated with business, trade unions, developing economies, so it was a very pleasant surprise to see the huge commitment the OECD made to patients and world health with this Forum.

“Over 500 participants representing civil society, patients, providers, policy makers, academics and industry came together to discuss key issues including: Harnessing digital technology and data to create proactive, people-centred systems; Caring for people with complex needs; The importance of measuring what matters to people and to patients.”

The speakers were from all around the globe, including health ministers, economists, …, and a few patient representatives.   It was a two-day meeting: the first day open to patient representatives.

Thanks to an invitation issued during an EPF conference on Patient Safety, LUPUS EUROPE was able to attend and was represented by Anne Charlet who went to listen and to learn, to meet and to tweet! Here is her report – previously published in our recent newsletter:

AnneIt was a full day of very high quality presentations and relevant questions and answer sessions.

My first impression was one of surprise as I slowly realized that absolutely every single talk had a patient-centric message:  Ask the patient, involve the patient, get patient reported outcomes, “doctors have to get off their pedestals and patients off their knees”!

The presentation that impressed me most was by Michael Porter, an economist and professor at the Harvard Business School.  He is not in favor of an incremental approach to developing and using patient reported indicators.  “The only definition of a successful health system is one that produces value for patients. We must establish global standard sets of outcomes, condition by condition. There is no excuse for inaction,” he said.

His economist’s approach, quantifying something that we often view as only qualitative, was fascinating.  He is a founder of the ICHOM project, which has as a goal to standardize outcome measures for key medical conditions, and thereby being able to truly show “success rates”.  I learned at this forum that they are just starting work on their first auto-immune disorder: Rheumatoid Arthritis.  For the moment, lupus is not in their plans, and as they are a non-profit organization and accept no funding from industry, they need to have a project funded first before they start work.  Something for the future?

There were many more excellent presentations.  The few patient representatives that were present seemed to be doing a lot of the tweeting, including myself: if you search on #Futureofhealth, you can read the tweets that went out over those days.

And to read a very good account of the day, look at Tessa Richards: Power to the people—via Paris Tessa Richards, British Medical Journal, blog entry here: http://blogs.bmj.com/bmj/2017/01/20/tessa-richards-power-to-the-people-via-paris/

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🦋 Living with lupus can feel overwhelming when you're trying to sift through an ocean of information that may or may not be reliable.

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... See MoreSee Less

🦋 Living with lupus can feel overwhelming when youre trying to sift through an ocean of information that may or may not be reliable.

🥵 Are you tired of endless searches?
😵‍💫 Do you feel overwhelmed by medical jargon?

🙌 It’s time to try #LupusGPT! Our AI-driven tool is designed to cut through the noise, providing you with trusted, doctor/patient-validated information.

💫 Whether youre a newly diagnosed patient, a long-term one, or a caregiver, #LupusGPT offers the support and knowledge you need to make informed health decisions alongside the invaluable support and guidance of your medical team.

🌍 Plus, with availability in multiple languages, #LupusGPT ensures that high-quality lupus information is accessible to everyone, no matter where you are or what language you speak.

Visit https://s.mtrbio.com/dkbhqzgrrd now and share this post to help us spread the word. Help us empower more individuals to gain control over their lupus management!
5 days ago

⁉️ Do you want to know more about diet & #lupus?

✅ Check out the #Lupus100 website, where you can find reliable information about lupus in a patient-friendly language.

🔊 Whether you're looking for tips on living with lupus, treatment options, or understanding lupus better, this website has it all. Plus, it's available in multiple European languages! Making it accessible to a wider audience.

Check it out now! ⬇️

lupus100.org/en/questions/should-we-follow-a-special-diet-in-lupus

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🇫🇷 www.rhumatismes.net/index.php?id_q=854
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🇷🇺 lupus100.org/ru/questions/should-we-follow-a-special-diet-in-lupus
Catalan: lupus100.org/ca/questions/should-we-follow-a-special-diet-in-lupus
... See MoreSee Less

⁉️ Do you want to know more about diet & #lupus?

✅ Check out the #Lupus100 website, where you can find reliable information about lupus in a patient-friendly language.

🔊 Whether youre looking for tips on living with lupus, treatment options, or understanding lupus better, this website has it all. Plus, its available in multiple European languages! Making it accessible to a wider audience.

Check it out now! ⬇️

https://lupus100.org/en/questions/should-we-follow-a-special-diet-in-lupus

🇩🇰 https://lupus100.org/da/questions/should-we-follow-a-special-diet-in-lupus
🇩🇪 https://lupus100.org/de/questions/should-we-follow-a-special-diet-in-lupus
🇪🇸 https://lupus100.org/es/questions/should-we-follow-a-special-diet-in-lupus
🇬🇷 https://lupus100.org/el/questions/should-we-follow-a-special-diet-in-lupus
🇫🇷 https://www.rhumatismes.net/index.php?id_q=854
🇮🇹 https://lupus100.org/it/questions/should-we-follow-a-special-diet-in-lupus
🇱🇹 https://lupus100.org/lt/questions/should-we-follow-a-special-diet-in-lupus
🇳🇱 https://lupus100.org/nl/questions/should-we-follow-a-special-diet-in-lupus
🇵🇹 https://lupus100.org/pt/questions/should-we-follow-a-special-diet-in-lupus
🇷🇴 https://lupus100.org/ro/questions/should-we-follow-a-special-diet-in-lupus
🇫🇮 https://lupus100.org/fi/questions/should-we-follow-a-special-diet-in-lupus
🇺🇦 https://lupus100.org/uk/questions/should-we-follow-a-special-diet-in-lupus
🇷🇺 https://lupus100.org/ru/questions/should-we-follow-a-special-diet-in-lupus
Catalan: https://lupus100.org/ca/questions/should-we-follow-a-special-diet-in-lupus
6 days ago

✅ Yes! As many of you guessed, the January theme of the #kicklupus campaign is... diet! One of the New Year's resolutions that is among the most commonly chosen by people every year.

🤓 Did you know that a well-balanced diet plays an essential role in the holistic approach to #lupus management🦋? It also helps support overall health and well-being.

🥦 From incorporating the Mediterranean diet🐟 to staying hydrated💧, small dietary changes can greatly impact the lives of those with lupus.

💪 Let's make this a year of health: join us in this challenge!

📸 Share your journey and tips and tricks towards a healthier diet using the hashtag and inspire others to make positive changes too.
... See MoreSee Less

✅ Yes! As many of you guessed, the January theme of the #KickLupus campaign is... diet! One of the New Years resolutions that is among the most commonly chosen by people every year.

🤓 Did you know that a well-balanced diet plays an essential role in the holistic approach to #lupus management🦋? It also helps support overall health and well-being.

🥦 From incorporating the Mediterranean diet🐟 to staying hydrated💧, small dietary changes can greatly impact the lives of those with lupus.

💪 Lets make this a year of health: join us in this challenge!

📸 Share your journey and tips and tricks towards a healthier diet using the hashtag and inspire others to make positive changes too.
1 week ago

🛠️ We are currently performing maintenance to enhance your experience with #LupusGPT.

✅ Adjustments & updates are normal and expected.

We appreciate your understanding & support as we fine-tune our tool to better meet your needs.
... See MoreSee Less

🛠️ We are currently performing maintenance to enhance your experience with #LupusGPT.

✅ Adjustments & updates are normal and expected.

We appreciate your understanding & support as we fine-tune our tool to better meet your needs.

1 CommentComment on Facebook

I come from a Pacific Island nation called Papua New Guinea. My country shares borders with Indonesia, Australia, and the Solomon Islands. I usually search on YouTube for interesting documentaries. Whilst looking up YouTube videos, I came across a documentary on people who suffer from SLE Lupus disease and their real treatment from www. multivitamincare .org. I had never heard of this crippling and debilitating disease affecting a lot of American Europeans. It is very tortuous to watch and hear patients who suffer. It is more like a combination of various diseases all put into one. Like a person who has suffered a stroke, plus someone suddenly becoming paralyzed, Parkinson's disease, COPD, ALS, cancer, etc., but I also get to understand that there has been a successful cure for this disease from www. multivitamin care. org It is too much for a patient to endure, such as they slowly begin to pass away if the right medication is not taken . Having a positive mind is a powerful tool . My prayers go out to Lupus patients and their caregivers.

LUPUS EUROPE Uniting people with Lupus throughout Europe
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