"Coeur d'Or": collaborative efforts for promotional and preventive cardiovascular care in West-Africa

[jdossou80_yahoo_com]

I’m Jean-Paul Dossou, from Benin in West-Africa.

Some wise people do perceive already the unsustainability of the current health care provision organization in western developped countries, but this is the dreamed model, that developping countries are running to. Is it possible to “jump a generation” in the organization of health care provision in developping countries? This is the underlying question of the “modern” collaborative care expriences we are going to share in this post about Coeur d’Or.

As a short backgrund, Cardiovascular diseases (CVD) induce yearly about 17 millions of deaths. Over 75% of those deaths occur in LMICs where risk factors are highly prevalent and the health system is poorly adapted to deal with chronicle and highly expensive emergent conditions. In Benin, the prevalence of high blood pressure is about 30%. Health promotion on this poorly funded issue, in this limited resource setting, requires innovative communication tools. To this end, Cœur d’Or (Redirecting... ) was created in 2011, to test the feasibility of using social media for providing promotional and preventive care against CVD in Benin, in a collaborative way.

We aim here to present briefly Cœur d’Or , and some lessons learned so far. We use a case study approach based on participatory observation, (in) formal in-depth interviews with different stakeholders and documents reviews on the solution.  Social media analytics tools are used for the quantitative analysis of the profiles of the solution users and activity.

Cœur d’Or is an open Facebook group of 21615 members, mainly from Benin (West Africa). It runs as a tool of keeping in touch with a huge number of the community members, allowing for a double-sense communication, spreading cutting-edge information on CVDs and building a community-based leadership on CVD. The targets are young, mainly from urban and semi-urban areas, educated and active on social media. They connect to the platform using mainly smartphones.  A wide range of subjects related to CVDs and Non-Communicable Diseases are discussed from several perspectives. Members can initiate a discussion stream, receive inputs from several profiles of members and get a summary from a medical expert based on key evidence-based prevention measures against CVD.

The group stands also as a social mobilization and community participation tools influencing the agenda setting at the national level. It is currently a member of the Multisectorial National Committee against NCDs in Benin, as a leading actor supporting the organization of national campaigns against CVD in Benin each year since 2011.  Using its online critical mass and its growing network in traditional media and several public and private institutions, the group is capable of mobilizing each year since 2013 material and financial resources up to 25,000 € to organize offline activities such as a walk (about 5000 participants each year), risk factors screening, interactive conferences during the world heart day. All those activities help at reaching people that are not active online and are done with the leadership of members that are not health workers.

The rapid development of telecommunications improves the access of a growing number of people to Internet and social media. A critical mass of the group improves its political influence and creates a web tool that can help for a viral diffusion.

Cœur d’Or demonstrates the feasibility of using social media as an innovative approach for offering promotional and preventive care on health issues in sub-Saharan Africa. It opens new windows for thinking and dreaming again for an effective community participation in all its dimensions in the global south.

Thank you very much for your comments and questions.

[alberto]

Impressive!

Welcome, @jdossou80@yahoo.com. And congratulations! Coeur d’Or seems like an impressive achievement.

I wandered a bit within the group (also applied to join). It has all the glory and the traps of Facebook itself: super-easy to join (and that helps your numbers), very mobile-friendly, but also difficult to sort out, with important content mixed with personal stuff like birthday parties and  even spam (as I write this, someone calling themselves “Marcel Enyonam” is offering cheap loans on about ten posts).

My main question is: do you get people exchanging about their experiences as patients (or perhaps care givers, like parents or adult children of patients)? How do they collaborate, and on what? I scrolled down a while, but I did not find much. But then, I am not a power user of Facebook, maybe it’s just me

[noemi]

Tell us about the walk

Hi Jean-Paul, a warm warm welcome to Edgeryders, we didn’t have a chance to meet in Brussels last Feb I think.

Impressive indeed, how many community organisers are needed to cater for a group of >21000?

What I like most about your initiative is that you organise offline gatherings like the walk, and I’m curious how they work, if you learn new stories. For example, some people here in the community mentioned how for them health- or social care is about reciprocity: People help other people in need and receive help when the time comes when they need it. Do you know how the people in your group relate to care? Is it a service or more a commmunity that they are part of?

Thanks again!

[jdossou80_yahoo_com]

Thanks Alberto and Noemi for your comments

It is amazing to read you, as you raise sharply some key concerns that the group is facing.

1- How do we help? The facebook group is just one of the means/tools of the group. As a group, with the resources available for us and the main gaps identified at the national level, we focus on promotional and preventive care. We concentrate in this group, global and local evidence relevant for anyone to prevent cardiovascular diseases.   Beyond the key “theoretical” principles of WHO, we try to find out, how to raise and to support the motivation of people to change sustainably their dangerous behaviors. There is a need to find the right balance between specificity (focus on the main purpose of the group) and attractivity (diversity of topics and angle of view, pictures, news etc…) in such a way that users have a feeling of distraction while they are exposed to the key messages of prevention of CVD. I perceive that in my context, Facebook is first of all used in for distractive purposes.

The online facebook group, is not a tool for curative or palliative care such as online consultations with drug prescriptions. Medical doctors are involved in the discussions and if required, they can give offline, specific orientations to go for curative consultations; but discussions in the group, do not involve curative or palliative care.

2- How do we collaborate? Online, each member has the right to share what matter for him, that is related to the focus of the group. This can be a question, a picture, a video, a comment etc… The use of this right of free expression in such a group is not so high everytime of the year. If you scroll down further, you will find periods of high participation  on some specific subject with high interest and later some period of low or no engagement. This depends on several factors, that we are still learning about. I attach to this comment a screenshot that presents a collaborative construction of an answer to a question raised in the group. I can send to you the whole power point if you want.

3- Dealing with the traps of facebook, how? Facebook is the social media that lot of people use in sub-Saharan Africa. The way they use it, seems to be more diversified and intensive than in Europe for instance. Other social media like twitter have a much lower audience in sub-Saharan Africa. So we use Facebook as an important collaborative platform in Coeur d’Or, with the risks that you mentioned including spams. The facilitation team has a critical role to cure the wall of the group. This team has to approve all the primary posts, but can not approve comments before their publication. The team has, however, to be vigilant to remove all the inappropriate comments regularly. Private birthday posts are treated as not alway treated as inappropriate. We tolerate them some time for active members as a mean to reward them and to sustain their motivation to collaborate more in the group.

4- Offline events. We realized early in our learning process in the group, that online presence alone is not going to help us reaching our goals. We organize collaboratively offline events: physical activities (walks), risk factors screening, interactive conferences and workshops. All those events are organized by members of the group. We use the online tools to recruit members who want to collaborate in the organization. We share with them some key principles and support. We use the online tools as well for advertisement of the events. The access to all the physical event is free of charge. We use a collaborative process to raise the funding, using members of the group that has skills and key positions in potential funding structures. By doing so, we were capable of raising up to 25000 dollars in 2015 to organize physical events. This is happening in a context where the ministry of health do not have any internal budget for this kind of event. The local representation of WHO makes about 2000 dollars only available for this kind of event. In the organization of those offline events, community members hold a lot of power in the process.

We still have a lot to learn, about this experience. Thanks for your attention. I’m very interested in learning from your reactions, analyses, and suggestions.

Thank you for being here with me.

[noemi]

Running like a well oiled machine

Thank you for the detail, it seems you have figured a lot out over the years. Also, as you can see Alberto and I are very much into communities, so for me the question is always around the “how”, how people organise, how you get things catering to such a large group. And I know from experience that moving from the online to running offline activities is suprisingly hard - some people to the first great, some people to the second one great, but being able to pull off both seems like a big win.

And the balance for you seems to be in doing prevention in a fun way: “There is a need to find the right balance between specificity (focus on the main purpose of the group) and attractivity (diversity of topics and angle of view, pictures, news etc…) in such a way that users have a feeling of distraction while they are exposed to the key messages of prevention of CVD.” And in collaboration, which is our bet too for edgeryders.

What do others think?

[alberto]

Different online cultures…

That’s very informative, @jdossou80@yahoo.com, thanks.

It seems that in the USA and Europe there is a “middle generation”: people that got on the Internet when it was still relatively new, let’s say before 2006. Those people managed to see the tail end of the noncommercial Internet; and they remember what it means for using a website to to be “hard”: slow dialup connections, textual interfaces, floppy disks with vintage browsers like Mosaic and Netscape. These people make good online collaborators; they go for content and community, and if they need to work a little harder to get it they will. This means they will forgive you websites like Edgeryders, that do not have the usability firepower of Facebook.

Younger people here are harder to engage. They have never known anything but superfast Internet with integrated video, always available on their smartphones. They do not miss the free, noncommercial web of the early days, an  have less patience for minor technical flaws.

From what you say, Africa skipped the early phase of the Internet. Almost everyone who is online now got online in the last 5 years. They have never known anything but Facebook. It is the only game in town.

Hmmm.