There are many little steps to take along the road of learning how social media, merged with sms-texting, can be effectively used to raise awareness and mobilize communities on health issues. The IMAXI Cooperative has been on this road for some 18 months, and learning while doing all the way. After a number of 24hr 'marathons' linked to UN High Level Meetings, we decided to set up a special 'space' where anyone could come discuss health issues on a regular weekly basis, at anytime of a specific day.
Since early November, we have been forging a new tool, #MeetUpMondays - offering non-stop discussions from 0h-24hGMT every Monday on diverse health issues chosen by dozens of guest moderators (hosts). We're developing different 'corners' of this space, including among others #R2Hchat, #NCDchat, #SDOHchat, #HIV_chat that allow these conversations to be ongoing from week to week.
MeetUpMondays is becoming an amplifier for a fast-growing number of people from around the world. We are all learning together - our cooperative, the 'Hosts', and each of the different chat participants. Now, we will take a few weeks to consolidate the lessons learned, while continuing to push forward with exploring how to use MeetUpMondays effectively in different formats.
Over the next few Mondays during the end-of-year holiday period, we will use an 'open-mic' system for MeetUpMondays. Anyone can bring up the issue of their choice, with a view to sparking a discussion with others. Health topics that others will probably like to discuss are best, including aspects of: cancer, women and children, HIV/AIDS, diabetes, accountability, lung and heart diseases, participation, public health funding, inequities and other social determinants of health. Raise your issue - and mobilize others to follow you forward to more people involved. So MeetUp on Monday from 0hGMT to 24hGMT, share your question, and use the hashtag #MeetUpMondays so we can help pump up the volume to spread the word.

HIV, TB, Cancer, Diabetes, Palliative Care... Where are the health advocates?

With the 'economic crisis', most governments will be spending much less per person on health than needed, and many people struggling with life-threatening diseases have little hope of finding the quality of care they need from the public health system. Decisions that will affect the lives of millions are being taken by these Governments without the input of the public. To encourage and support the greater involvement of people in this health debate, a new social media tool has been created by the IMAXI Cooperative, driven by volunteers living with HIV and chronic diseases.

Over the last month, the IMAXI Cooperative has been running #MeetUpMondays, a series of 24 hour nonstop "Fresh & Friendly" meetings on Twitter and SMS. The aim is to bring people together to discuss health issues and what can be done to advance the rights of millions to a healthier future. Simply signing-up for a free Twitter account, and registering your mobile number if you want to participate only by texting, can open the door to meeting and sharing with hundreds of other concerned citizens: PLHIV, PWD, patients, caregivers, health pros and advocates exchanging views and finding common ground. Dozens of Guest Hosts from around the world moderate these 30 minute chats on diverse issues, including HIV/AIDS, TB, Cancer, Diabetes, Palliative Care, Right to Health, Social Determinants, Mental Health, Women and Children and more.

The next #MeetUpMondays event is on Monday, 5 December, just days before Human Rights Day. Come MeetUp ShareUp SpeakUp - the Right to Health must be advanced, powered by our voices in common cause. Just search #MeetUpMondays on Twitter for session details, or SMS to +91 8129094433 with your name. Meet Up next Monday — "Fresh & Friendly" and Healthy!

UPDATE: The 3rd #MeetUpMondays was great - each week more people are participating, and coming back every week. Join us, nonstop Mondays.
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How to Host a #MeetUpMondays Chat
The IMAXI Cooperative is bringing together some good people to build a new tool for global or local health. Every Monday, we are organising multiple non-stop 24hour discussions (chats) on topics chosen by dozens of guest hosts (moderators) via Twitter and SMS text. This allows people living with diseases, advocates, activists, experts and health professionals to choose a topic, and encourage diverse people to share on this issue. It provides a platform for all to express themselves in a friendly environment at a convenient time from anywhere in the world. The IMAXI Coop has done a dozen or so of these Online/SMS events as trials over the last year to learn how they can work best. Some were linked to High-Level UN Meetings (WHA, HIV, NCDs, SDOH) and others, like these, under a more general theme. Now, we're applying some lessons learned, while continuing to learn while doing,

Have a Health issue to raise? Bring it to #MeetUpMondays
The first series of MeetUpMondays are under the banner of Human Rights, in the build up to Human Rights Day on 10 December. Afterwards, we will continue this initiative, and grow the participation of these weekly Monday Meet-Ups. In the new year, we hope to offer other languages as well. We see this as a way to collectively build an open system that will lead to the greater involvement of many more people from diverse communities, and offer a tool for accountability for the previously voiceless. Meanwhile, we've some more learning and constructing to do over the next months, and we're looking for a few good brains to lend a hand. (read more...)

UPDATE: Growing bigger and better each week, the 4th #MeetUpMondays is getting ready. Come join the next 'marathon'. Monday 5 Dec. 0h-24h GMT.

Every year, the UN Office of the High Commissioner for Human Rights (OHCHR) marks International Human Rights Day on the 10th of December. Usually, this means a gathering of a few high level people that declare the importance of human rights, with a different annual theme. Few people in the world are aware of Human Rights Day, and even less see the event as a platform to speak-up for the Right to Health, recognized by almost all UN Member States as a universal right. Yet although agreed on paper at the UN, its practice on the ground has not been universal at all.

In this time of "hard times" for almost everyone, social movements are growing around the world to raise awareness of inequities, and to create a dialogue between diverse 'indignants'. 'The People', as Dr. Margaret Chan, DG of WHO, called the bottom billions, are beginning to mobilize, with free and open discussion of the problems so many face. This 'conversation' helps move health forward, including the right to health.

This year the IMAXI Cooperative is organizing a series of social media events to bring people together to discuss the state of the world's health and what can be done to advance the rights of billions to a healthier future. Building on our experiences of 'marathon' non-stop 24-hour 'chats' that span the time-zones for greater participation, a weekly 'maxi-meet-up' is coming soon.

Every Monday, from the 14th of November until Human Rights Day a month later, IMAXI is hosting six simultaneous fresh and friendly chats on Twitter, linked with Facebook and SMS text. The Meet-Up Mondays will offer an online space to share, learn and dialogue with people around the World on dozens of different topics.
Meet-Up, Share-Up and Speak-Up. Just go onto Twitter and follow one or more of these hashtags:
#NCDchat #SDOHchat #R2Hchat #HIV_chat #PAGchat #PALLIchat

UPDATE: With the help of many of the Conference Roundtable participants, a very special non stop three day online event is taking shape. Tune in by twitter: @SDOHchat...
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WHO World Conference on Social Determinants of Health. Special Sessions for Stakeholders via Social Media / SMS

Background
"WHO is convening a global conference on 19-21 October, 2011, in Rio de Janeiro, Brazil, to build support for the implementation of action on social determinants of health. The conference will bring together Member States and stakeholders to share experiences on policies and strategies aiming to reduce health inequities. The event will provide a global platform for dialogue on how the recommendations of the WHO Commission on Social
Determinants of Health could be taken forward." - WHO

Foreground
To increase the involvement of global stakeholders and stimulate broader dialogue about the social determinants of health, the IMAXI Cooperative is organizing a series of online / SMS discussions linked to the WHO World Conference in Rio de Janeiro. These sessions will connect the 'expert community' with people in communities most affected by health inequities and wider civil society through social media and mobile phones. The WHO "event will provide a global platform for dialogue" - IMAXI plans to make participation more accessible.

The UN High Level Meeting on Non Communicable Diseases will be held in a few days in New York. The Member States of the United Nations, almost 200 governments, have concluded the drafting of the Declaration that they will endorse at the meeting. A year long process, guided by the WHO, is drawing to a conclusion.

We at the IMAXI Cooperative have drawn our own conclusions from this process, and on the final Declaration. People with NCDs have been sold out. Patients have been neglected, deleted and excluded from any benefit from this multi-million dollar high level sham. Not involved in the negotiations, so there are no words in the Declaration about aiming to provide universal access to treatment and care for the millions of our poor peers, no recognition of the need for less expensive generic medicines, no engagement to even provide the inexpensive morphine that millions of us need for pain relief but can't get due to the 'War on Drugs', no targets or even a goal to be found in the 'lofty' text. We've been sold out - by Governments and by the big NGOs that negotiated the declaration. The word 'Patient' (or people living w/...) is not even found in the text, nor is 'rights'(or human rights...). Likewise, the words 'accountable' and 'transparent' are not to be found - an indication that this "bold" statement from the UN is just empty words that outline the problem of NCDs, but include nothing solid to help the people suffering from Cancer, Diabetes, Stroke, Heart and Lung diseases. For all those involved, there is something in the text to make them either look good or that will lead to resources in the future. For patients suffering today, just empty words from spin doctors and public relations experts.

This has happened because we have not organized ourselves. Patients have not been involved in the negotiations, nor have a voice 'at the table' of the NCD Alliance. It is time to unite and build a platform for participation that can bring our collective voices to all discussions that concern us living with the diseases. "Nothing about us without us" will be the banner above a patient-powered system of participation that we will now develop, collaboratively. It's been suggested that we need a Patients Advisory Council so that anyone living with an NCD can advise and 'have a say' on policy and practice. It's also been proposed that we immediately begin to open draft a Declaration for the Greater Involvement of People with NCDs. We now look forward to hearing from patients, and to moving forward together.

Over the last few weeks, we have been non-stop busy exploring a new space. No, not outer space, but the new universe of twitter chats. Building on a year of study of various social media forums for exchange, the IMAXI Cooperative determined that a global chat on twitter could be an effective platform for our mission of increasing health stakeholders. When connected to both SMS for mobiles, facebook and the website, the chat format offers a good mechanism for moving new people (non-usual suspects) from passive to active participants in health issues. Building on the very successful start of NCDchat, a nonstop 24 hour forum for people to discuss, share and organise on issues related to non-communicable diseases, the IMAXI Cooperative is now preparing to launch another new tool for new hands — HIV_chat is coming. What is @HIV_chat? Friendly & fresh chat focused on HIV/AIDS. PLHIV, caregivers, families, health professionals, advocates & activists are all warmly welcome. Every Monday, non-stop!

Recommended: Follow @Right2Health on twitter:
- The Right to Health is one of the cornerstones for building a better world for everyone. Since to 'Know Your Rights' is the first step in making them into realities, understanding the Right to Health is crucial for health advocates and activists. The Right to Health has five legal legs to stand tall on - obligations that almost all governments have agreed or signed up to fulfilling. As advocates and activists, we may have to remind some of our 'leaders' of their responsibilities. On the other hand (takes two hands to shake), our obligation is to help more people know their rights. Unfortunately written in a language that will discourage most people from reading for pleasure, below is an extract from a new publication from the Institute of Tropical Medicine in Belgium. This section provides the road map of where the Right to Health came from. Where it goes is now up to us all. ...read more...

The World Care Council, a non governmental organization based in France and India, was commissioned by the Stop TB Partnership to conduct research, through an innovative application of new web-based technologies, on the actual 'state of the stake-holding' in the Patients' Charter for Tuberculosis Care (PCTC) amongst national programs, public and private providers, civil society and the patient communities in the ten highest burden countries.
This document is intended as a preliminary overview of the findings and report on the process. It is also an invitation to comment and input, open to all TB patients (and ex-patients), so that recommendations to the WHO, Stop TB Partnership, National programs and civil society organizations can be drawn from these study results. As with the 'open' drafting of the PCTC itself ("Write Your Rights!"), the development of formal recommendations will be based on the views of many diverse patients from communities around the world. "Write Your Recommendations!" is now open to all.
....continues, read more.

Following the UN High Level Meeting on HIV/AIDS in June, another UN Summit is approaching. On the 19th and 20th of September, World Leaders will assemble to discuss how to address the growing pandemic of Non Communicable Diseases (NCDs) including Cancer, Diabetes, Chronic Heart or Lung Disease. Similar to the HIV Summit, they will issue a Declaration or Outcome Document, to which they will all sign on. Unlike the HIV Summit, the NCD Declaration will be a disaster for People Living with HIV/AIDS if a few countries (US, Canada, European Union, Russia...) are allowed to block access to NCD care for millions of PLHIV. A review of the draft Political Declaration shows that each point that calls for improved access or care for HIV/AIDs patients is being water-downed or deleted by these countries. As PLHIV are disproportionately more vulnerable to NCDs, this is both unacceptable and a shame on the UN. Activists and advocates must speak up for the human rights of PLHIV at the NCDs UN Summit. Learn more at www.NCDAlliance.org, and come 'chat' anytime on the Mondays preceding the Summit on twitter. Follow @NCDchat

See the compilation of the Draft attached as PDF, and below are some of its examples of deletions and text weakening changes to the draft Declaration: