Tessa Richards, assistant editor at the British Medical Journal, has posted a well reasoned commentary on the BMJ site, “Enlist the patients’ help.”
I’m no expert on the UN’s work here but what we seem to be seeing is, once again, paternalism: “We who know all will think about you patients (who are a problem) and decide what to do about you.” And the result is as shown in Dr. Richards’ piece. Excerpt:
Next week the United Nations will unveil its blueprint to tackle the global epidemic of chronic non-communicable disease. Its summit meeting will focus attention on rapidly rising rates of disease, which threaten economic and social development in poor countries and are putting unsustainable burdens on all countries’ health systems (BMJ2011;343:d5762, doi:10.1136/bmj.d5762).
The UN’s initiative has provoked much debate. The decision to confine the focus to cardiovascular disease, diabetes, chronic respiratory disease, and cancer was widely criticised. Mental health should have been on the list, because it’s the coexistence of depression and fatigue that erodes patients’ quality of life and accounts for most of their loss of productivity. Obesity, musculoskeletal disorders, and neurodegenerative disease should have been included too, and more emphasis should have been put on drivers such as population ageing, malnutrition, and the wider determinants of health. …
Amid the controversy scant attention has been paid to the patients. This is surprising. There is convincing evidence that supporting patients with chronic disease to self manage their conditions and make informed choices about treatment is a good way to improve the quality and safety of care and reduce costly and inappropriate over use of healthcare resources (BMJ 2011;342:d1513, doi:10.1136/bmj.d1513). Their input into service design and delivery and research agenda is valuable too.
I felt strongly enough about it that I commented, via their “Submit a Rapid Response” link in the left sidebar; you may want to, too, because this seems to be one of those persistent issues where if we patients don’t holler, we keep getting thought about but not asked. And the result is exactly what happens in any industry where customers aren’t involved: costs keep going up, quality doesn’t, and the problems don’t get solved.
I met Tessa at the Salzburg Global Seminar on shared decision making (SDM) last December, and we both participated in the BMJ’s podcast on SDM, per this April post. She’s a passionate e-patient and e-patient parent herself, as well as an accomplished journalist.