IAPO congress (day 2) – Anne Charlet

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!

Run with Andreas

We have a new page on the LUPUS EUROPE blog, in honour of an inspiring young man who has decided to run with and for LUPUS EUROPE. To follow his story each week simply click on the tab ‘Run with Andreas’.

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Week 0/24

Greatest life Challenge, till the next one!


A few months ago I ran my first half marathon – I had been in the sport for 5 months before I felt ready to do so. Lots of people may argue that it can be achieved sooner. I decided to take it slow and listen to my body before taking the challenge. Also, I forced myself to run for a cause – to keep me motivated – and dedicated it to my sisters who have been winning against unexpected events in their lives. I have to admit thinking of them during the race worked pretty well, especially in the last kilometers when my gastrocnemius muscles got so tight I could barely run.  But running a half marathon, I believe means you only get half the fun. So I decided to run a full one – 42,2km. Oh and also, why not do it at one of the most popular ones – the New York Marathon!


This coming November, 2016, I will be one of the 50,000 lucky ones who will be running through all five boroughs of New York City. I am also a Lupus patient – I was diagnosed in 2007 with symptoms of thrombosis and Raynaud’s syndrome.  Because of that, I would like to run for Lupus and I have joined forces with LUPUS EUROPE (NGO) which will be providing me with a space on its blog to communicate my training news up until I complete the marathon on 6th of November. You have probably guessed right, this will be my motivation in the last kilometres, when I may be experiencing paranoia and I won’t be able to feel my knees or muscles. It’s a win-win, right? Raise awareness and promote an active lifestyle for Lupus as well as get the motivation I need to complete the race 🙂


The idea is to share my weekly training plan and dedicate each week to one of the 24 member countries  of LUPUS EUROPE.  It will be a great opportunity to share my experience with each member country, if possible through a Video Call.

This week is dedicated to Denmark. 

“Remember that guy who gave up?  …Neither does anyone else.”

Andreas Panteli

Lupus Warrior

Disclaimer: The above awareness campaign is part of my volunteer work and has nothing to do with my professional activities.

Members – Save the date

LUPUS EUROPE’s annual convention will be held in Würzburg, Germany this year from 28th September (afternoon welcome and registration) – 02 October 2016 (closing after morning sessions). The German Lupus Association is celebrating their 30th anniversary this year and is looking forward to welcoming us to Germany for the occasion. More information coming soon…


IAPO congress – Anne Charlet

IAPO Logo High Resolution
HI! from the IAPO (International Alliance of Patients Organisations) Global Patients Conference 2016!

I’m representing Lupus Europe at this amazing conference!   From www.iapo.org.uk  “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.”

My objective here was to represent Lupus Europe (we are a voting member), and give visibility to lupus.

–> I have been tweeting as lupuseurope (just during this conference, usually it’s Nuria!) using the hashtag #GPC2016 and #lupus, so you can look through the tweets and see some photos and other quotes from the days.

It’s been very rich agenda so far.   Monday we started with what they called a “Speed-up dating” which was a fun meet and greet. We had two minutes to one person and we had to learn about each other. I met 15 people/groups in 30 mins! I think it’s a great idea to break the ice! 

Then we had the AGM where we heard old business, financials and elected five (!) new board members.

We heard from Jolanta Bilinska (Governing Board Chair) about IAPOs objectives, and Kahwaldip Sehmi, IAPO CEO, about his road to IAPO (he had such good care with his illness that he wanted to make sure everyone could have the same!)
They listed IAPO’s goals as:
Help patients’ organizations to be as effective as possible
Be the leading patients voice on health issues
Empower the global patient movement

They talked about how the UK Charity laws have changed, there are new ways of presenting budgets, and so that took time to adapt.

Keynote speaker: Nicolas Sireau gave a very inspiring speech, about Fundamental Diseases (he has two children with Black Bone disease, an ultra rare disease) It’s on Ted Talk so you can see what he has to say about why it’s so important to study rare diseases: https://www.youtube.com/watch?v=B4UnVlU5hAY

We had a talk from Professor Peter Boyle on the challenge of rising global cancer rates, particularity in lower and middle-class income countries.  He said we had to consider the patients, giving many memorable quotes, such as “statistics are patients with the tears wiped away.”

Then we had Workshops.  I was part of the workshop, “Building effective and innovative networks and campaigns for greater impact.” and presented the Patient Panel work on Adherence to Treatment done by Alain, Bernadette, Davide and Jeanette (among others) in 2014.  The presentation was really well received and so many people were impressed by the work done (well done team!!)

Penny Cowan, American Chronic Pain organisation, gave a really impressive talk about new tools they have invented and are trying to get passed to talk to doctors about pain.  I am sure we could do an excellent adaptation of one for lupus!  They are all available for download from https://theacpa.org/Communication-Tools

There was also an interesting talk from Mattias Wienold, European Aids Treatment Group, and summaries of the other workshops.  All talked about how we need to focus on the patients and the patients need to have endless persistence to get the results they want!

The presentation brought several people to come to talk to me about our lupus work.

End of Day one on Saturday evening – I’ll write about today’s meeting and some of the interesting people I met later or tomorrow.
Thinking of your all!

IAPO congress 9-11 April (press release)

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

World Lupus Day – W.H.O. petition

In one month’s time it’s World Lupus Day. For the occasion the World Lupus Federation (which reunites the Lupus Foundation of America, LUPUS Europe and other Lupus federations around the world) has set up a petition, addressed to the World Health Organisation, requesting that Lupus become a priority, enabling patients to be diagnosed and treated as quickly and effectively as possible. http://worldlupusday.org/petition.html