The phrase “patient centricity” makes us all feel good. Health professionals adopt the term regularly, spend more time with patients, express more concern, and try to push the policy envelope just that little bit further. Thank you for this. However, while the direction and sentiment are laudable, the pace and scope are just far too slow and narrow, especially for patients with chronic conditions. It is the hierarchical and siloed nature of the health system across many countries, which limits and sometimes stifles any real and prolonged patient centric design.

People with chronic conditions have high error rates in their care, poorly managed drug-to-drug interactions, and conflicting management approaches across their healthcare, all of which contribute to poor health outcomes. [1]

I estimate that over the course of a year, most patients spend less than half a day (12 hours) dealing directly with a clinician and addressing acute concerns. These estimates are derived from members of the patient community, from patient authored blogs and from my own experience. Those with a chronic condition may spend up to four days or 96 hours, and if things are not good spend time in hospital, perhaps adding another four days.  What this means is that patients with chronic conditions interact with with the healthcare system for a rough maximum of about 2% of the entire year. Who looks after them for the remaining 98% of the year?

What is clear is that patients, their carers, and their family are patient centric for the majority of the year, not the clinical world. The intention here is not to devalue the contribution of clinicians or healthcare professionals, but to underline that:

• Most healthcare happens in the community; and
• Care provision is really about care-giver and patient activity aided by professional help.

The trouble is that professional help is arranged hierarchically and is focused on episodes of ill health.  In many countries this hierarchy limits or excludes allied health professionals (physiologists, dieticians, podiatrists, and alike) who may well hold the key to sustained and co-ordinated care for the chronically ill.

I have experienced the impact of this personally. Unfortunately I came down with severe rheumatoid arthritis almost seven years ago. My three admissions to hospital did not fill me with confidence as anything I said was politely disregarded. While my highly experienced specialist can “walk on water” and has returned me to a relatively normal condition, engaging with allied health professions was not on his “to-do” list. In short, much was left to me to discover in a cloud of anxiety furiously searching the internet. I discovered that medications, exercise, meditation, and diet were the key foundations in developing my new concept of “normal” wellbeing. What also helped was listening to other stories of patients with rheumatoid arthritis and pooling their collective knowledge. These experiences led to the birth of Dragon Claw and a push towards self care in association with the clinical world.

I work with a group of over 12 dedicated volunteers and 10 commercial partners now developing solutions to address these concerns. We focus on just three chronic diseases, are moving rapidly and have launched our own website which is now used by members in 12 countries. Our concept is radical in that it promotes patient centric self-care and attempts to provide coordinated care management. It does not provide medical advice. The website is designed to use online technologies to provide community and support for people with Rheumatoid Disease, Lupus, and Juvenile Arthritis, and to their care givers.

Over the last two years we have discovered how desperate people with these conditions are in many countries. In the USA where access and cost are huge issues; India where access is almost nil; and in the UK where members complain about inadequate care. While this is only anecdotal evidence it shows how little support people with chronic diseases have. We get regular messages from stressed and isolated people who are looking for better support and can not find it locally.

There is a quiet revolution going on under the noses of most medical professionals and health systems.  It is a revolution about information access, equity of access, and participatory medicine. We believe that Dragon Claw–and other community support networks for patients are on the right track. The revolution is led by the patient.

Michael Gill is founder of Dragon Claw and a former board member of the Health Informatics Society of Australia. For a full biog and competing interests, see here. 

[1] Federal Parliament, Inquiry into Chronic Disease Prevention and Management in Primary Health Care Submission 41 Submission to the Standing Committee on Health–Report into Chronic Disease Prevention and Management in Primary Heath Care.