I feel that the big missing piece in getting consumers/patients engaged is the lack of available healthcare outcome data provided to patients. We need laws that will require hospitals and the agencies that collect this data (AHRQ) to make it available to the public.

New Jersey recently passed legislation that will allow this kind of data-driven patient empowerment…they passed legislation that allows the state to publicly post the outcome data that is fed into AHRQ by hospitals (complication rates, mortality, patient safety indicators, etc,).

If women/their families could compare hospital induction, cesarean, complication, VBAC, and infant/maternal mortality rates, they would be more engaged. But hospital association lobbyists have effectively blocked this data from being made public in many states.

The US maternal mortality rate is increasing and it is directly associated with the increase in surgical birth since 1995 (CDC). The Joint Commission recently posted a sentinel event alert on this topic (http://www.jointcommission.org/SentinelEvents/SentinelEventAlert/sea_44.htm).

Patients can only be empowered when they have good data from which to compare hospitals and providers. This is especially true in maternity care. The challenge is shaking the data loose from the tight grip of providers/hospitals/insurance companies & the government (AHRQ).

I think we also need structural changes in how budgets for funding research are determined. Dave’s “Patient in Chief” concept might move the needle on that one.

I appreciate your idea about consumers aligning with researchers. Do you have an example of a university that has this kind of consumer involvement in research plans or grant-writing?

The second problem is that allied health professionals (and patients) often have little experience with grant writing, and may have limited access to mentors. It is amazing what an advantage a well-written grant has over a poorly written one. A well-written grant describes, in detail, a scientific process that leads to generating the data necessary to support (or refute) a hypothesis. The importance of the work or the magnitude of the problem are often not considered in study sections, instead reviewers focus on the quality of the proposal and the likelihood that successful execution will result in advancing knowledge.

Patients and allied health providers need to disrupt the system from the inside, rather than agitate from the outside. Take the time to figure out how to write a winning grant. If you think that the medical staff at your local medical center might not be interested in your work, why not enlist a well-respected biostatistician? NIH generally wants to fund the best science and collect the best evidence. They will support you if you take the time to figure out how they want to be asked.