Hello again – now a note about day 2 at the IAPO GPC 2016!
(International Alliance of Patients Organisations) Global Patients Conference 2016)
Sunday morning was devoted to UHC (Universal Health Coverage).  We had two presenters, from the WHO (World Health Organisation), Nittita Prasopa-Plaizier and Mario Ottigilo.    UHC is a global project with the goals :
  • health service coverage;
  • financial risk protection; and 
  • equity or coverage for the entire population.
I believe it was launched in 2008, and has an objective of being implemented by 2030!
You can learn more about it here: http://www.who.int/mediacentre/factsheets/fs395/en/
Nittita Prasopa-Plaizier, WHO, said there was a role for patient organisations in the UHC.  The role of ensuring that people understand their own health care system.  She also talked a lot about putting “the care back into health care” and beginning with the people.  She felt compassion is needed on both sides: Patients prepared, and Doctors attentive. As “Compassionate Care” in UK.
She said that the WHO does not work with patient organisations, but that was where IAPO came in.  IAPO is the go-between for WHO and organisations. 
Mario Ottigilo, WHO, talked about the roles of pharmaceutical companies and the private sector in health care.  There is a place for partnerships with private and pharmas for UHC.  Private companies can support  the UHC through training of healthcare professionals, capacity-building, and awareness campaigns.
Kawaldip Sehmi (IAPOvoice CEO) told us about his grandmother, who was known for tolerating someone until the next wedding party, when she would seek her very public revenge!  He told us to, “Speak up! You have the ability to embarrass the government at the wedding.  Embarrass them into listening to us!” 
Then there was a panel on the different approaches to innovation to health care.
Robert Johnstone, IAPO board member (and now an EPF board member), presented a patient’s view of the NHS (National Health Service in the UK). He talked about the great affection people have for the NHS in the UK, “we love it, especially interaction with doctors”.  NHS is a health system where care and medicine are free at delivery,  but Robert Johnstone said that too little money and effort, only 4% of the budget, is spent on prevention.  He continued, “”The NHS has become a fear-based system whereby ‘we have to treat you, just in case’ .”
Joshua Wamboga, Uganda Network of AIDS Service Organisations, talked about how Rwanda brought global health care just years after genocide.  
We then had two breakout sessions. 
For the first one, I attended the session, “Patient involvement in research: innovation in the drug development and access pathway”, chaired by Antonio Ciaglio, IAPO.
Antonio said in his opening words that patients need to be at the center of research and involved from the start.
Alison Lightbourne, IAPO, says that no matter what everyone says about patients being involved in research, patients are still at the “kids” table.  It will take work to get to more acceptance and involvement of patients.  We all want better drugs coming to market, so we have to work on ensuring that.  There are two projects at the moment that should help that, from IMI: Protect Project and the GetReal Project.
The Protect Project, The goal of PROTECT is to strengthen the monitoring of the benefit-risk of medicines in Europe, using new tools and methods that are profoundly patient-centric. http://www.imi-protect.eu/objectives.shtml
The GetReal Project, aims to show how robust new methods of RWE collection and synthesis could be adopted earlier in pharmaceutical R&D and the healthcare decision making process. Aim is to try and get “real world” info from patients in order to best tackle challenges.   https://www.imi-getreal.eu
IAPO believes that patients have unique needs, and they want to understand what matters to patients most. 
Jane Meijlink International Painful Bladder association, gave such an eye-opening presentation on the role patients can have in standardising terminology and definitions.  “Healthcare is a chain with multiple links and standardisation of terminology and definitions can have an impact on every link in the chain and therefore a major impact on the patients, the patient’s healthcare and ultimately the patient’s whole family.” 
Ricardo C Santiago, Health Insight in Brazil, gave a really fascinating presentation about a maternal health project, EUSAUDE, that includes health analysis. What is really special about this program, is they collect all the data and provide it to do valuable Maternal health analysis in Brazil, which has had an positive impact on maternal health are in Brazil.
–> Dr Santiago is a very good person to follow and to talk to about health data collection and data ownership, which was a recurring topic at this conference.
Kate Hallet of Quintiles, outlined their work.  She said she has been passionate about her work since started working on patient-centric trials in 2005 with lupus Europe! 
She said that Quintiles is creating an easy to search on platform for patients to find clinical trials.  It’s not live yet, but is supposed to be going live soon.  It provoked quite a bit of interest as the www.cinicaltrials.gov website is hard to decipher for a normal person.
There were comments and questions about two projects that IAPO is involved in: IMI, Innovative Medical Initiative (“Europe’s largest Public/private initiative”), aiming to speed up the time to market for new drugs; and PFMD, Patient Focused Development Coalition, which was launched Oct 2015. 
There was a comment that any patient going into the clinical research and/or trials has a very steep learning curve!  And it’s been that way for at least 25 years.  However, the GetReal project and Eupati should help.
Another comment was about the ownership of data being really one of the very key issues that should be addressed very quickly, we are already behind!  There is hope about sharing data and doing data analysis to be had from Big Data technology but we are far from the objective.
The second breakout session was small group networking, and the topic was defined by the attendees.  Our group ended up being the largest, on, “How do we create and sustain strong and capable patients’ organisations;”
After much discussion, the three point plan to ensure a healthy organisation was: 
  1. Have a clear strategic plan, which includes
    1. Shared vision
    2. Shared values
    3. Succession plan, (and make sure you transfer the knowledge! “As soon as you know something, share it with someone in the group.”)
  2. Human Resource (volunteers) Management is essential, with 
    1. Clear, ethical rules
    2. Recognition (say thanks)
  3. Communication
    1. Of strategic plan and vision
We also told IAPO and EPF that we need training and help, and perhaps they can develop a course.   That’s when Camille Bullot of the EPF told us about the upcoming training on “Transparency & Ethics”, and another one: 2016 EPF Regional Advocay Seminar: “Getting the patients’ message across to the national and European levels”.  Have a look here: http://www.eu-patient.eu/Events/
The final plenary concerned different approaches to patient involvement and access.
Penney Cowen, American Chronic Pain Association, showed us the new pain scales they have created and are trying to get accepted by all hospitals in the US. IN fact they have created many different tools for pain and other medical situations. Such good work, and so obvious it seemed strange that their scales hadn’t already been adopted!  https://theacpa.org/Communication-Tools
Victoria Pinkney- Atikinson, Patient Health Alliance of Non governmental Organisations, gave  a very inspiring speech about work that is being done in South Africa.  Very much of a “think global, act local” advocate, and a woman who believes we need to speak up, shout out, about what patients need.  “We patients are too moderate. We need to get active! To unzip our mouths!”  And “Patient groups need to be Watchdogs, not Lapdogs! ” 
Sylvie St-Laurent, Pfizer, spoke about the RA specific platforms.  Apparently they are really looking at involving patients pre-clinical trials and are actively training patients. 
We had the group photo and then the gala dinner for the end of day 2!

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2 days ago
LUPUS EUROPE

#lupus is a #raredisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #raredisease in #europe.

Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease

#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website

rarediseases.org/
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#Lupus is a #RareDisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #RareDisease in #Europe.

Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease

#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website 

https://rarediseases.org/
2 days ago
LUPUS EUROPE

Today is rare disease day!

🚨 There are over 300 million people who live with a #raredisease in #europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🔴 Some facts about #RAREDISEASES:

1️⃣ There are more than 6000 identified rare diseases.

2️⃣ Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.

3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them.
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.

4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
The most serious complication of neonatal lupus is a heart condition known as congenital heart block.

5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life.

Along with organisations Rare Disease Daye DayEURORDIS-Rare Diseases Europeurope, we will carry on working towards an early diagnosis, access to treatment and equality for #raredisease patients 🙌.

Thank you for your support on this #RareDiseaseDay!

#rarediseaseday2024 #ShareYourColours
... See MoreSee Less

Today is rare disease day!

🚨 There are over 300 million people who live with a #RareDisease in #Europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🔴 Some facts about #RareDiseases: 

1️⃣ There are more than 6000 identified rare diseases.

2️⃣  Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.

3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them. 
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.

4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop. 
The most serious complication of neonatal lupus is a heart condition known as congenital heart block. 

5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life. 

Along with organisations Rare Disease Daye DayEURORDIS-Rare Diseases Europeurope, we will carry on working towards an early diagnosis, access to treatment and equality for #RareDisease patients 🙌.

Thank you for your support on this #RareDiseaseDay! 

#rarediseaseday2024  #ShareYourColoursImage attachmentImage attachment+2Image attachment
3 days ago
LUPUS EUROPE

🌟 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲 𝗠𝗮𝘁𝘁𝗲𝗿𝘀: 𝗝𝗼𝗶𝗻 𝘁𝗵𝗲 𝗥𝗮𝗿𝗘𝗥𝗡 𝗣𝗮𝘁𝗵 #𝗟𝘂𝗽𝘂𝘀 𝗦𝘂𝗿𝘃𝗲𝘆 🌟

🦋 Each journey with lupus is unique, yet there are shared paths: the initial confusion at the first symptoms, the quest for a diagnosis... But we know every lupuERN RECONNETs the power to initiate change.

🤝 ERN RECONNET and Lupus Europe have collaborated on the RarERN Path #lupus project, aimed at capturing and understanding the patient experiences across Europe.

Your story is crucial to reshape and enhance the care and attention we, as lupus patients, receive.

📢 𝗪𝗲 𝗡𝗲𝗲𝗱 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲❗

If you're living with lupus 𝗶𝗻 𝗘𝘂𝗿𝗼𝗽𝗲, your participation is invaluable.

By sharing your patient pathway, you can contribute to a larger effort to understand how people experience the condition, their pathways and ultimately, to try and improve healthcare services.

🔗 𝗔𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲 𝗶𝗻 𝟭𝟰 𝗹𝗮𝗻𝗴𝘂𝗮𝗴𝗲𝘀:

🇩🇰Danish: bit.ly/SLEStories_Danish
🇳🇱Dutch: bit.ly/SLEStories_Dutch2
🇬🇧English: buff.ly/3uExnRz
🇫🇮Finnish: bit.ly/SLEStories_Finnish
🇬🇷Greek: bit.ly/SLEStories_Greek
🇮🇸Icelandic: bit.ly/SLEStories_Icelandic
🇮🇹Italian: bit.ly/SLEStories_Italian
🇱🇹Lithuanian: bit.ly/SLEStories_Lithuanian
🇵🇱Polish: bit.ly/SLEStories_Polish
🇵🇹 Portuguese: bit.ly/SLEStories_Portuguese
🇪🇸Spanish: bit.ly/SLEStories_Spanish
🇸🇰Slovak: bit.ly/SLEStories_Slovak
🇫🇷French: buff.ly/3IfuJVf
🇩🇪German: buff.ly/3IfHf7e

Your story can lead to significant shifts in lupus care. Let's come together to make a difference. Your experience, your opinion, your struggles, and your triumphs can help shape a better future for all lupus patients across Europe.

𝗧𝗵𝗲 𝗱𝗲𝗮𝗱𝗹𝗶𝗻𝗲 𝗶𝘀 𝘁𝗼𝗺𝗼𝗿𝗿𝗼𝘄❗
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🌟 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲 𝗠𝗮𝘁𝘁𝗲𝗿𝘀: 𝗝𝗼𝗶𝗻 𝘁𝗵𝗲 𝗥𝗮𝗿𝗘𝗥𝗡 𝗣𝗮𝘁𝗵 #𝗟𝘂𝗽𝘂𝘀 𝗦𝘂𝗿𝘃𝗲𝘆 🌟

🦋 Each journey with lupus is unique, yet there are shared paths: the initial confusion at the first symptoms, the quest for a diagnosis...  But we know every lupuERN RECONNETs the power to initiate change.

🤝 ERN RECONNET and Lupus Europe have collaborated on the RarERN Path #Lupus project, aimed at capturing and understanding the patient experiences across Europe.

Your story is crucial to reshape and enhance the care and attention we, as lupus patients, receive.

📢 𝗪𝗲 𝗡𝗲𝗲𝗱 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲❗

If youre living with lupus 𝗶𝗻 𝗘𝘂𝗿𝗼𝗽𝗲, your participation is invaluable.

By sharing your patient pathway, you can contribute to a larger effort to understand how people experience the condition, their pathways and ultimately, to try and  improve healthcare services.

🔗 𝗔𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲 𝗶𝗻 𝟭𝟰 𝗹𝗮𝗻𝗴𝘂𝗮𝗴𝗲𝘀:

🇩🇰Danish: https://bit.ly/SLEStories_Danish 
🇳🇱Dutch: https://bit.ly/SLEStories_Dutch2 
🇬🇧English: https://buff.ly/3uExnRz 
🇫🇮Finnish: https://bit.ly/SLEStories_Finnish 
🇬🇷Greek: https://bit.ly/SLEStories_Greek
🇮🇸Icelandic: https://bit.ly/SLEStories_Icelandic
🇮🇹Italian: https://bit.ly/SLEStories_Italian
🇱🇹Lithuanian: https://bit.ly/SLEStories_Lithuanian
🇵🇱Polish: https://bit.ly/SLEStories_Polish
🇵🇹 Portuguese: https://bit.ly/SLEStories_Portuguese
🇪🇸Spanish: https://bit.ly/SLEStories_Spanish
🇸🇰Slovak: https://bit.ly/SLEStories_Slovak
🇫🇷French: https://buff.ly/3IfuJVf 
🇩🇪German: https://buff.ly/3IfHf7e 

Your story can lead to significant shifts in lupus care. Lets come together to make a difference. Your experience, your opinion, your struggles, and your triumphs can help shape a better future for all lupus patients across Europe. 

𝗧𝗵𝗲 𝗱𝗲𝗮𝗱𝗹𝗶𝗻𝗲 𝗶𝘀 𝘁𝗼𝗺𝗼𝗿𝗿𝗼𝘄❗
3 days ago
LUPUS EUROPE

🚨 Tomorrow is #RareDiseaseDay!

🙌 Let's show our support to all those organisations that, like us, work every day to improve patients' quality of life.

🔊 Share the officiRare Disease DayDay campaign video and help us raise awareness of the importance of an early diagnosis, equitable opportunities and access to healthcare.

#ShareYourColours

buff.ly/49NLliU
... See MoreSee Less

🚨 Tomorrow is #RareDiseaseDay!

🙌 Lets show our support to all those organisations that, like us, work every day to improve patients quality of life. 

🔊 Share the officiRare Disease DayDay campaign video and help us raise awareness of the importance of an early diagnosis, equitable opportunities and access to healthcare.

#ShareYourColours 

https://buff.ly/49NLliU
LUPUS EUROPE Uniting people with Lupus throughout Europe
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