The key to success for patient organisations is having patients involved at the highest levels of management
As a teenager growing up with rheumatoid arthritis in the 1980s, finding information about my condition and an appropriate support network was virtually impossible.
There was no internet and very litt le on offer as far as patient organisations go. The ones that I did find – and even volunteer for – were mostly focused on an older community and somehow missed the mark for younger patients like me.
This is still the case for many.
Fast forward to 2018, where I am now working with the CreakyJoints family, a patient-founded and patient-led organisation that supports millions of patients worldwide. It’s a significant contrast to what was on offer back then and living proof that the internet, when harnessed for good, can support so many unmet needs. Especially in the chronic illness community.
CreakyJoints was founded in 1999, along with the growth of Web 1.0, where online chat-room communities and patient-to-patient digital communication thrived.
So has the rapid evolution of the internet and digital technology allowed patient support organisations to evolve as well? Partly, yes, but there’s much more to creating a successful organisation that will still be relevant decades on.
If we look at CreakyJoints as an example, the key to its success lies in its grassroots values. A desire to help other arthritis patients feel less lonely is why cofounder Seth Ginsberg created it.
With this strong, authentic foundation and sense of community spirit from day one, the organisation has grown enormously over 20 years in the United States, now expanding to South America and Australia.
CreakyJoints Australia was launched in 2015 to focus on the needs of Australian patients and their families. It is run by Australian patients working alongside its successful parent organisation.
Of course, organisations don’t simply thrive on core values alone. Or do they?
One value that sets CreakyJoints apart from others is that it never asks for donations from patients or their families.
This value alone has forced it to develop an innovative and responsive att itude to help fund their work. It’s helped form the right partnerships along the way, providing financial support and new avenues for growth.
Couple this with its patient-led philosophy, and you’re on to an organisation that will stand the test of time, because changing and growing has always been part of its DNA.
It should be obvious to all patient organisations that one of the secrets to success is, well, to involve patients. But, somehow, this is often not the case. Most will include patients through social media, surveys, events, support services and research, which goes a long way, but it’s the higher level of involvement that can make the difference.
Having patients at management level and on special committees, councils, and boards can create a much richer organisation that ensures the patient perspective is central to projects big and small.
After all, these patients are the same people whose lives will benefi t by the decisions made.
They are the ones on the batt le fi eld, the ones who are living and breathing their illness and surely know what is required to make their lives, and the lives of others also living with arthritis, better.
In other words, having patients involved in all aspects of an organisation allows it to stay in tune and relevant to its community. This is why I believe CreakyJoints has managed to flourish and continually evolve – and why I want to continue to be involved.
So will this formula continue to work in the future? If you stay relevant to your audience, surely it must?
Looking to the future, I asked Ginsberg what he sees as the biggest challenges for CreakyJoints and how he intends to “futureproof” it.
“CreakyJoints is the antidote to Dr Google’s misdiagnoses,” he says.
“It’s our hope that in the future, we can help people bett er navigate the internet – which can be full of misinformation, bad advice, and other scary features – directly to the health information that’s most helpful and to the right type of support for the individual in need of it.”
With the proliferation of “fake news” and other malicious misinformation online, patient community websites such as CreakyJoints are rapidly gaining importance.
“There is a lot of snake oil on offer from the internet. By providing education, support, and opportunities to get involved locally and nationally for free to the user – from a trusted source – CreakyJoints has become a utility of sorts,” Ginsberg says.
In the future, the technology that will become more available to us and applied to the internet and mobile platforms will enable CreakyJoints to become an even more bespoke organisation for each individual patient and caregiver.
Because there are many types of arthritis, and many diff erent stages of each type, there are virtually countless combinations of patient types, needs, and areas of need. Individualising the support, education, advocacy and patientcentered research for each individual is where we’re headed, aided and accelerated by technology’s rapid evolution.
So the CreakyJoints experience for a woman in her early 20s, just recently diagnosed with rheumatoid arthritis, will inevitably be much diff erent than that of a retiree with degenerative joint disease.
What those two people want and need from a patient organisation is very diff erent.
We recognise the individual needs of these people and we’re engineering the next 20 years of our organisation with that personalised objective in mind.
Naomi Creek is National Coordinator for CreakyJoints Australia
