Public access to representative information: A foundation required for consumer-focused care
The ability for physicians, researchers, and the public to have access to representative information is required for all to make real decisions about health options and treatments. One of the core frustrations with the current system is that the information is not available– locked away in paper charts, cluttered internet searches, unpublished study results, or provider “preferences”.
To summarize, the information:
- can’t be aggregated
- can’t be found easily
- isn’t released
- isn’t put on the table for consideration, despite being an acceptable option
As we think about the fragmented components of our system, different solutions jump out, but most really only address one or two of these issues with information. While I see people with technical solutions to the first two (EMRs to aggregate the info, and health 2.0 companies are working on the improved distribution of health information), I see more issues with items 3 and 4, as they deal with the mindsets and incentives of players in the current system.
We’re starting to see requirements for companies to at least register the studies they are doing (rather than just submarining those with initially poor results) led by people like Catherine DeAngeles, editor of JAMA. While significant information also lies behind insurance company, employer, hospital, and DM company doors, the healthcare transparency movement, with Michael Leavitt on the bully pulpit looks like a start in the right direction.
The more insidiuous issue is providers giving patients the appropriate set of recommendations for the patient– uncolored by pharmaceutical company incentives (see speakers fees, No Free Lunch), personal moral/religious constraints, personal gains from reimbursement (EPO use), or restrictions due to rebate tiers (formularies).
I think its valid to profit from one’s personal approach to giving care (as opposed to many of the universal healthcare folks), but that consumers should have full disclosure when they select their physician which filters being used.
This of course, is in addition to the whole issue of patients actually being able to understand the information thats out there (stat from Steve Beller in a great article on HealthDot: Only 16% of consumers searching online for health information actually find what they were actually looking for). There are also issues, as Steve mentions, around including Complimentary and alternative medicine information (CAM) and addressing the mind-body connection. But we need to start somewhere, right?
