It is always a good news when the EU project officer speak about your work as “great conception”.

CAREGIVERSPRO-MMD (C-MMD) is a digital platform, integrating a broader diagnostic approach, incorporating the live-in family caregiver – people with mild cognitive impairment or mild to moderate dementia dyad and considering this dyad as the unit of care.

In May 2017, the C-MMD team plans to start the pilots of C-MMD platform in France, United Kingdom, Spain and Italy. A sufficient number of active users need to be recruited and maintained in the C-MMD platform, in order to reach the mutual assistance communities benefits. The Social Media Plan (SMP) supports the consortium in building these communities, documenting a top down Social Media Strategy.

The SMP will include: goals, target audience, core topics, editorial calendar, stakeholders engagement, forecast, and measurement in each community for each experiments’ country.

Even though Social Media and online communities can serve educational functions and seem to be an effective means of communicating medical resources, it is associated with important challenges. Misuse of social networks can have consequences, ranging from seemingly simple issues such as affecting the reputation to serious legal disputes. Maintaining professionalism and preserving the concepts of confidentiality and privacy is essential.

In this document, we will also analyse some of the dilemmas that have been brought about by the use of social networks in the healthcare environment and provide some support to the C-MMD team in building such communities.

The link of the full document (PDF) can be found there : C-MMD SOCIAL MEDIA PLAN

In this deliverable, we speak about the The Jakob Nielsen’s 90-9-1 rule: In most online communities, 90% of users are lurkers who never contribute, 9% of users contribute a little, and 1% of users account for almost all the action . This rule shows that participation in communities is highly skewed and unequal, and there is a small fraction of hyper-contributors (super users) who produce a substantial amount of the community contents .
The 1% rule or 90-9-1 principle explains participatory patterns and network effects within Internet communities.

The rule states that 90% of actors observe and do not participate, 9% contribute sparingly, and 1% of actors create the vast majority of new content. This 90%, 9%, and 1% are also known as lurkers, contributors, and super users, respectively.

In a 2014 study published in the Journal of Medical Internet Research by Trevor van Mierlo , descriptive data were extracted from four long-standing health communities: the Alcohol Help Center, Depression Center, Panic Center, and Stop Smoking Center sites. The 1% rule was consistent across the four communities.