Lest anyone forget — including the American Hospital Association, which wants to take 30 days post-discharge to supply copies of medical records to patients — HIPAA explicitly gives patients the right to access their own records. This is not new. The HIPAA privacy rules have been in force since 2002. Yet, far too many patients have no idea of this right and far too many providers don’t inform patients of this right or do what they can to prevent access.
Fortunately, the HHS Office for Civil Rights, which enforces HIPAA privacy and security standards, is trying to change that with an outreach campaign, including this video.
Unfortunately, the video has been viewed just 556 times as of this writing. Equally unfortunately, the video directs viewers to visit HHS.gov/OCR. But the real information you need is at http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/index.html. I found that page using Google, not by trying to navigate the menu, which is not very intuitive, even for someone who knows the healthcare industry. I can’t imagine the average consumer finding that page without help or plain old dumb luck.
Various HHS agencies are trying hard to disseminate messages to the public. I think of AHRQ’s Questions are the Answer campaign. I’ve seen poster-size ads around Chicago telling people to visit ahrq.gov for a list of questions they should be asking their healthcare providers, but the better link, not mentioned in the ads, is ahrq.gov/questions.
For that matter — and I mentioned this to one of the AHRQ higher-ups at the HIMSS conference a few months ago — how many people really know what the Agency for Healthcare Research and Quality is? Wouldn’t it be better to have a more memorable URL? The Obama administration is good at setting up URLs for programs it wants to promote for political reasons — think recovery.gov and even the consumer-friendly healthcare.gov — but the less-politicized divisions such as AHRQ (remember, Director Dr. Carolyn Clancy is a career professional who has run AHRQ for two presidents since 2003) and OCR haven’t done so. They need to come up with easy-to-remember URLs that the general public can remember. Bureaucrat-speak just isn’t getting the job done.
Meantime, physicians need to become more patient-friendly, too. I invite you to check out this Salon article from a few weeks ago entitled, “Listen up, doctors: Here’s how to talk to your patients.” Please share with family, friends and, yes, your doctors. Share the OCR video, too. If OCR can’t make the information easy to find, I will.