Online patient communities are growing at a rapid clip, and not just for patients although the benefits for this user group are huge.
Online patient communities are always open and available. People can get in touch with peers whenever they feel like it, without having to leave their home. There are no travel expenses, no parking problems, no set times for meetings and no need for a regular commitment unless the patient wants it.
The barriers of age and culture are also removed. In online communities, all that matters are the words someone speaks (or types), so everyone is on a level playing field. Looks, wealth, weight, location or profession have no bearing.
Breaking barriers or unspoken, often subconscious taboos or prejudices, opens doors to honest discussion and creates a worldwide community base for everyone who cares to join in. There is opportunity to ask and answer questions on any disease and condition, and academic institutes or industry experts often also use these digital patient communities to offer surveys that can help deepen their understanding of patient concerns and needs.
Education and experience
While there is no substitute for professional consultation, guidance and treatment for illness or chronic conditions, online patient communities are the next best thing. They provide educational resources that stem from discussions based on real-world experience by fellow sufferers. They offer comfort, support and encouragement in a myriad of ways that healthcare professionals may not have the personal knowledge (or time) to pass on. Examples may include giving travel tips for coping with specific conditions, or simple things like the best sticky tape to hold a device in place.
The help and advice given in these online support groups is available when it’s needed, without appointment, and archives of discussions are almost always searchable so there is often a large database of peer experience to draw on.
Useful for caregivers
An important part of the mix in chronic, long term conditions is the support given by carers. It’s a role that often falls on the shoulders of family or friends, and can become a huge burden over time.
Connecting with others in the same position, who understand the pressures and concerns at a deep level, is invaluable in helping carers to avoid emotional burnout. From practical advice such as how to cope and keep going when you’re at the end of your tether to simply offering an outlet for frustrations, it empowers caregivers to draw inner strength that might otherwise be missing.
In online patient communities, there are always people with personal experience who can guide those at an earlier stage in the journey on matters of financial or legal concern, such as giving an insight into benefit entitlement or other avenues of support.
A sense of belonging and community spirit is often lacking in people’s real, physical day to day lives, especially for those with restricted mobility or living in isolated locations. Gaining access to patient communities has shown to be effective in producing improved patient outcomes since they’re there for support and encouragement at all times. They can give patients a sense of belief in themselves, a way to be accountable and receive praise for milestones met, they can improve motivation and make strides into the tricky area of patient behaviour change.
But beyond all those good things, when clinicians, pharma, researchers, educators or device developers get involved, new treatments and therapies become available much faster through shared knowledge.
While online patient communities will never replace personal visits to professional healthcare providers, they offer an alternative avenue of support and education, filling gaps in patient needs that would otherwise remain. In this way, they are an easily-accessible resource of immense value to everyone concerned in the health and the care of patients.