I have joined the Engaged Patient community, and I recommend it to you for your consideration.
(With apologies for exerpting an excellent “About” statement)
Engaged Patients is a consumer and advocate-led project to inform, engage and empower you to feel comfortable and even confident in taking a greater role in your own health care. We believe that access to the right information at the right time will transform your health care experiences and improve health care quality and patient safety for everyone… .
We believe that excellent tools, technologies, and strategies empower people to be better informed and more engaged in every health care encounter. To that end, we have worked for over a decade creating patient education resources and building relationships in the patient advocacy community.
A funny thing has been happening in the patient safety movement.
Actually, it is neither funny nor unusual. As resources have become available to promote patient safety, an entrepreneurial and imperial attitude has invaded what began as a grassroots democratic process. All-too-often self-promotion has trumped the original mission.
It’s human nature, I suppose, and it’s a trend that some of us are old enough to have witnessed in other efforts to promote equality: domestic violence movement, civil rights movement, antiwar movements, gender rights movement, various previous efforts at healthcare reform, patient-based support groups secretly funded by pharmaceutical companies, etc.
Sporks are very old, and have seen it all before.
So, it becomes very important to support projects that maintain the integrity of the cause and whose leaders are not in it to promote themselves.
Engaged Patients is one of the good guys. It is free of corporate interests and non-profit in the best sense of the word, depending upon volunteer donations and the generosity of its organizers to maintain the services it provides.
And the services are many ‒ and free. The resources are also well-vetted by the organizers who are well-informed and familiar with the qualities that make a resource reliable.
For the past several years as part of my participation in Consumer’s Union Safe Patient Project network I have carried Julia Hallisy’s materials around with me when I have attended or spoken at conferences, whether in healthcare or poetry (yes, poetry). And I have admired the meticulous, well-crafted and beautifully produced informative pieces she has produced.
Whenever possible, I obtain permission to display books I’ve collected which have been written by members of the Safe Patient Project network. Julia’s handouts which are convenient, attractive and well-crafted, are often picked up both by consumers and by medical professionals.
Therefore, I am really pleased to report that she has partnered with another SPP advocate, Mary Ellen Mannix, a professional child and healthcare advocate who was instrumental in getting legislation through in Pennsylvania to improve safe care for newborns. Together, Hallisy and Mannix have created a project that makes Julia’s materials more easily available online as well as compiling extensive, (remember) vetted free materials from others that can assist families as they approach healthcare facilities.
As I have already said, this Spork has joined the Engaged Patient community, and recommends it to you for your consideration.