|Here's a thought: ask them what they want|
Fortunately, this disconnect is bubbling up into the mainstream scientific literature. The latest example is this Viewpoint that appears in the October 28 issue of JAMA. The authors point out that the perspectives of expert physicians who develop guidelines are typically different than the general public, caregivers or persons with a disease. For example, while the NCQA promotes an A1c threshold as a important measure of diabetes care quality, a compelling survey of patients with diabetes suggests that that emphasis may be displaced.
Where to from here? The JAMA authors offer three commonsense recommendations. Future guidelines should:
1. be developed with the input of patients and frontline clinicians.
2. encompass the full range of patient experiences, not outcomes. This means accounting for the burden, impact on quality of life and role function dimensions of any treatment recommendations.
3. avoid strong recommendations when the best course of action depends on the patients' context, goals, values and preferences.. Lacking a clearly advantageous outcome with minimal side effects, guidelines should offer a conditional suggestions.
The DMCB modestly offers up three additional suggestions for the population health community and other stakeholders:
1) Absent a satisfactory guideline process from the usual national organizations, it would not be a bad idea to take this bull by the horns and develop a parallel set of guidelines that meet the principles outlined in this JAMA article.
2) Organizations like the NCQA and NQF need to be more flexible in promoting evidence-based guideline-based metrics by moving away from a reliance on their monodimensional clinical measures and toward more nuanced measures of meeting patient preferences.
3) Finally, while national variation in health care delivery is a huge challenge as we continue to build a coherent health system, it may be time to reconsider the notion that all variation is bad. Human beings are variation, and the likelihood of imposing local "best practices" across the U.S. will not be in the best interest of patients with different views of what it best for them.
Image from Wikipedia