What I learned from consumers

John Santa

John Santa, MD, MPH, Director of Dissemination, OpenNotes

I was privileged to work at Consumer Reports for seven years as the Director of the Health Ratings Center. As a doctor I thought I already knew a lot about patients and what mattered to them, but my time at Consumer Reports taught me a lot. When I had the chance to hear from medical consumers, especially the ones who had been activated by clinical outcome or economic inequities, I realized I had only heard and lived one side of the story.

What Consumer Reports is really good at is sharing reliable information in a way that empowers people to make informed decisions in the marketplace. My job in health ratings was no different – I analyzed data and translated well-organized reviews of science into meaningful comparisons to help people make important decisions about their health.

Throughout the past 75 years Consumer Reports has worked hard to reduce information inequality across the mass market. However, at the individual level, there’s some catching up to do. A major reason health markets don’t work as well as they could is that most patients don’t have easy access to their personal health information. Instead they rely primarily on their doctors, nurses and pharmacists to guide their health care decisions. And that often means confusion.

So, you’ll understand why when I saw the results of the OpenNotes research published in 2012, I was stunned. Giving patients easy access to the visit notes clinicians write about them really helped these patients feel better about their care, themselves and their ability to manage their care. They trusted their clinicians more and, what was most impressive, after the year-long study, almost all (the research reports 99 percent) wanted to continue to see their notes.

As expected, some physicians had concerns, but once notes were easily accessible, problems did not occur.

It’s simple, really – why wouldn’t you want to see information that could help you understand your life, your body, yourself and your options? The information about us is, after all, ours.

A fantastic example of how access to information can lead to better care is the evolution of breast cancer evaluation. When women having a breast lump removed insisted on fully participating with their doctors in decision making, everything changed in breast cancer surgery – for the better.

We all wonder what our clinicians write about us in our medical record. I forget a lot of what my doctor tells me – don’t we all? Access to an easily available reminder just makes sense. And there’s no better expert to make sure the information is correct than the person it’s about, right?

There are now about eight million people who can read their notes online, whenever they want. Only about 340 million to go.

When I saw that I could help with something that almost everyone wants, it was a no brainer for me. For almost a year now I’ve been helping disseminate the practice of OpenNotes to doctors, hospitals and patients. I have yet to meet someone who does not want to see their notes, or if they don’t, would keep me from seeing mine. So the next time you talk to a doctor, nurse or pharmacist, tell them you hear that some patients are able to see their notes quickly and easily, and that you would like to be one of them.

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