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Despite all of the privacy shenanigans by Big Tech platforms, we remain enthusiastic about the idea that patients can help other patients through difficult decisions. We are struggling to find ways to ensure that patient to patient communication should be safe and secure, but in many cases, patient-peer support is so important in the lives of some patients, that it is better to communicate insecurely than to not communicate at all.

If healthcare providers hear about the problems with Big Tech specifically, and with Facebook in particular and, as a result, warn your patients away from online resources, you could be depriving your patient of exactly the help that they need to thrive. Living with a disease or dying from it, may be outside your area of expertise, even if you know all there is to know about the disease. Peer patients have insights and can help patients with the experience of dieases, rather than the understanding of the theory of disease, or the treatments of disease that you provide.

Please help us not throw the baby out with the bath water with online patient communities.

Here are some specific things you can do to help.

We want you to participate in patient peer communities. Most mature communities establish formal relationships with healthcare provider to ensure that their communities do not contradict the latest evidence based medicine. If you are a specialist the patients in your domain of expertise have a community online and they would welcome you.

If you are a general practitioner of any variation, there is a role for you too. There is a thriving meta-patient community and we would love to hear from you.

If you are involved in the leadership at your clinical institution help us by asking if there are legitimate “expert” patients involved in the leadership and governance process at your hospital. If that is already in place, further ask if that patient connection has been looped in on the digital communications strategy at your organizations. Remember that digital communications does not just mean your PHR, it means your website too, and we need more informed patients influencing the design of these systems to make them responsive to patient needs, rather than just “responsive to mouse clicks”.