Thursday, May 8, 2014

Transparency and Access Needed in Medical Information

(from the May 8, 2014 issue of the Grand Haven Tribune)

Most of the hullabaloo about the Affordable Care Act, AKA ‘Obamacare,’ has been about giving more people access to health care. That is a noble goal, and we have yet to see if the long term effect of this massive legislation actually accomplishes that in a way that is affordable and leads to actual care.
           
But one area of access that is not getting enough attention is access to information about health care. This form of access should be about the necessity and/or effectiveness of proposed treatments, the cost  of specific medical procedures, and most importantly, a patient’s own medical records.
            
On the first one, we are failing, literally. An organization called Catalyst for PaymentReform (CPR), of San Francisco, along with Newtown, Connecticut-based Health Care Incentives Improvement Institute issued a report card on medical cost transparency. Michigan received an F, and few states did much better.
            
Many consumers are paying more of their own health care costs. Many of us are in high-deductible health savings plans. Yet it is difficult to know up front what a proposed treatment or procedure will cost. Even if insurance will cover the cost, it is important for consumers to be able to shop around and compare prices as we do with many other significant purchases. Whether we pay or insurance does, it will save us all money if the costs are transparent and consumers have knowledge and choice.
            
Even after the fact when a bill or insurance statement is provided, the patient has less than full knowledge about costs. Procedures are vaguely worded, entered more than once, or even listed only by some code number meaningless to all but someone at the doctor’s office and insurance company. Actual patients are left in the middle, and feel as if they are being talked about rather than talked to.
            
Seeing doctor’s notes is also important, but not easy to come by. They are increasingly entered into an online system so that multiple doctors and other health professionals can access in one place a patient’s health record. That makes sense. What doesn’t make sense is that these online systems are often not accessible to the patient.
            
One test of such a system happened in Boston, Seattle and rural Pennsylvania. Using a secure portal called OpenNotes, patients were invited to review their doctor’s notes. 82 percent of them took advantage and said they felt more informed, at ease, and took better care of themselves.
            
In our own case, it has been a mixed bag. Some doctor’s offices easily offer copies of notes. Others require us to go through a ridiculous process of requesting them, receiving them from some company in Georgia, and then being asked to pay per page, including several pages of extraneous information we did not ask for. Most maddening about this is that it is in compliance with the state law. Michigan’s Medical Records Access Act (Act 47 of 2004) does stipulate who gets access to patient records, including patients and third parties. But it also sets the rate. The fees are updated every year, and for 2014 include an initial fee of $23.42, $1.17 per page for the first 20 pages, and .59 cents for pages 21-50 and .23 cents for pages 51 and after.
            
Based on the fact that we have seen numerous errors in my wife’s record, we feel the issue here is not just cost but safety. The law should be changed to compel medical providers to give full and free access to a patient of their own medical record within one week of each visit. They should also include a process to sign off on the records as accurate and to amend or correct any inaccurate information. Much of this can be done online, or in an app, and some providers are doing this. But it should be standard by law. I’ve appealed to my state representative and senator on this matter but only received generic thanks for contacting them.
            
Meanwhile, the Michigan Department of Community Health named an advisory committee last year to review the 1978 public health code and recommend changes to anything in the code, which covers everything from licensing to how medical records are stored and accessed. The committee will only make recommendations, not actual changes. But I await their report to Governor Snyder due this spring and fervently hope that more patient information about costs, procedures, and their own records is near the top of their list.
            
One of the greatest causes of stress in a medical situation is uncertainty. That is made worse when patient’s are not informed about their own condition, options, costs, and the bigger picture success rate of proposed medical procedures. Allowing informed decision making is the hallmark of democracy, and should be so for health care as well. More efforts in this area will lead to patient satisfaction and improvements in the economy, insurance, health systems, and individual health.