Without inspired individuals, patient communities fail. Without patient communities, inspired individuals cannot find traction.
Inspired individuals are central to the successful development of online health communities. Without them, whether arising from statutory bodies, patient organisations or the private sector, online health communities are at best deprived of the oxygen needed for their development and at worst destined to fail. Equally, without these individuals’ activities being deeply entwined with, and built on, wider patient communities these activities rarely gain traction.
Our synthesis of research results identified an interesting, and essential, dynamic between the need for motivated individuals to establish and drive the intention and direction of online health communities and the need for a wider patient community to anchor and provide the sustained momentum needed for success.
Interviewees, whether leading, contributing or playing an ancillary role in an online health community repeatedly identified the impetus for online health communities as arising from personal experience or personal motivation. Whether a patient suffering from a disease, a family member of someone suffering from a disease or motivated by personal interest, a deep determination and a sense that the subject matter “is about life, not about work”, as one interviewee explained, was a common experience across all interviewees and central to successful online health communities.
Whether patient or clinician the energy in the field sits squarely with these individuals, whose experience leads them to become intrinsically driven. Most notable in patients, again and again we have seen real change and innovation driven by the people who have a personal reason to engage and shape the online tools and resources they need to improve their worlds. This is because in this new networked world people now have the possibility of realising benefit from their actions in a way that was not previously possible within the old asymmetries and hierarchies. This is also the case with some clinicians where they have a deep personal drive or need or where the professional infrastructure is lacking and a digital solution fills this gap.
At the same time it is aggregated patient demand that makes online health communities fly and magnifies this individual motivation. Once established as a community it is the peer to peer dynamics of these online communities that cements user engagement, leverages the power of patient engagement and so increases the import of patient and peer led activity within healthcare.
In psychodynamic terms the containment provided by the patient community, usually within an online platform or website as well as a real world legal form, provides security, directs and amplifies the potential and power of the inspired individual and provides the credibility and authority (although interestingly often without any forms of traditional power) required for online health communities to be successful.
Individuals can do little without a patient community. Patient communities are fundamental to online health communities. A healthy, dynamic relationship between the two is essential for success.