Saturday, April 28, 2018

Expanding Patient Rights to Access Health Information and Protections

Expanding Patient Rights to Access Health Information and Protections

>> Jodi Daniels: Next we will be hearing from Jocelyn Samuels, who is the new director of the Office for Civil Rights.  You know, when we talk about consumer engagement in healthcare, often the first thing folks think about or many think about or used to think about is privacy of health information.  They have a privacy rule in place for over a decade and while people think about the protections that came with the privacy rule, I think the most powerful thing that HIPAA privacy rules did was some of the patient rights, particularly granting consumer, the right to access own health information.  I remember talking to a group of doctors in the early days right after the rules were passed and this was actually seem to be shocking that patients should be able to get copies of their records because the doctors that I spoke with saw those records were their own records and I think it really was the beginning of a culture shift where doctors and patients have a part to play together in reviewing the information and sharing in the treatment decisions and for patients to be engaged with their clinicians.

So as I mention, Jocelyn Samuels is a new director of the office for civil rights which is the office that is responsible for developing, interpreting and enforcing HIPAA security rules, among many other things.  (Inaudible) tenure at the department of Health and Human Services Mrs. Samuels was at the department of Justice and prior to that she was Vice President for education and employment at national women's law center in Washington, D.C. Where she was engaged in legislative and policy advocacy to promote enforcement of title seven and title nine.

She previously served as counsel to the late U.S. Senator Edward Kennedy and senior policy attorney at the equal employment opportunity connection.  Please join me in welcoming Jocelyn Samuels.  >> Jocelyn Samuels: (Applause)    Thank you everyone.

I'm so happy to be here today.  As you can undoubtedly tell from the letters after my name, I. Am not a doctor, but I have been a patient and I know how important and if you ever had any doubt Emily's story would tell you how extraordinarily important access and empowerment is for patients around the country.  So I am really, really delighted that this, my maiden speech on HIPAA topics as director of the office for personal rights is in the context of this fourth annual Consumer Health IT Summit and with all of you in this room I'd like to thank ONC for their partnership, they have helped to pave the way for consumer engagement in the world of emerging health technology and are real leaders in our efforts to ensure that all consumers are empowered to manage and improve their own health through electronic health records.

I'm also delighted that the right to access is front and center in this meeting and I'll be talking a little bit more about that as I go forward.  As you know, the health insurance portability and accountability act of 1996 fondly called by some HIPAA, protects the privacy and security of individual health records.  Importantly for purposes of consumer engagement and participation in healthcare, HIPAA also guarantees that individuals and their personal represents can see and get copies of their medical records.  That right to access, which is    which applies whether health information is on paper or electronically is critical as have you heard today to enable individuals to play a more active role in their health care, to manage their treatment decisions and to improve their relationships with their health care professionals.

So let's talk a little bit about how HIPAA helps to make that happen.  Obviously for these reasons, the right to access personal health information is the corner stone of the privacy rule under HIPAA.  Ocr, the office for civil rights at HHS. Enforces that rule and we are committed to strong protection of the right that guarantees, in fact we recently strengthened patients right to access in two important ways.

First, patients now have an expressed right to gain access to their electronic medical records. Second, patients and their personal representatives soon will have greater rights to get their lab test results directly from the laboratory, rather than through their providers. They will certainly still be able to get those results to their providers but changes issued last February in coordination with CMS and CDC give patients a new option of getting their test reports directly from the laboratory.  The deadline for laboratory to comply with the rules is October 6, three weeks from now and will be speaking more in depth on this topic this afternoon on a panel discussion, if you want more information.

We look forward to working with our many lab partners around the country as these rules are implemented and count on them to ensure a smooth patient experience.  We're also counting on all of you here today to help to get the word out to patients about their rights and about how to access their medical information.  Access to information as we said can enable patients to track their progress, monitor their lab results, communicate with their treatment and adhere to their treatment plans, but patients with only do this if they know they have the right and you are critical partners in the effort to ensure patient education and empowerment.  Here is how OCR can help.

We have a number of tools on our website that can provide information for both consumers and providers so that they can learn about their rights.  For example, we have a series of chain videos on our YouTube channel that explain patient rights and cover entities obligation, we're just shy of two million views.  Million is a lot, but it is not enough.  We need to get the word out about those.

At the last IT summit, we issued letter clarifying patient right to access to electronic health information that, letter is on ocr's website and we can provide links to those of you who would like to pass it on.  We also have an information is powerful medical campaign, powerful medicine campaign which was awarded 2013 secretary meritorious second highest award the department offers.  The campaign aims to increase awareness of HIPAA rights and benefits among HIV positive black men who have sex with men, people who we've referred to by the acronym MSM, black MSMs continue to be disproportionately affected by the HIV epidemic.  Although they comprise only 1 percent of the U.S.

Population they represent 25% of new HIV infections.  That's why we have directed this campaign specifically at them, black pride parades around the country and presented materials on our website so we can provide tailored information and encouragement to people who are vulnerable to HIV and its terrible impacts.  We also have four consumer brochures on our website, one is called your health information privacy rights, another is called privacy security and electronic health records, a third is understanding the HIPAA notice and the fourth is sharing health information with family members and friends.  These aren't catchy titles, but they are really important documents that provide important information for consumers on both what their rights are under the law and how they can exercise those rights, they are available on our website in eight different languages and I encourage you to disseminate them widely.

That's part of the way we reach out to consumers, but we're also anxious to ensure that we reach out to providers so that they understand how to comply with their responsibilities under the law.  So we've worked with our partners at ONC to launch a model notice of privacy practices which has been down loaded more than 200,000 times.  Again, great statistics, but the more broadly we can circulate this, the more helpful we can be to providers who want to ensure that they are in compliance with HIPAA.  The tool is a plain language document available in both English and Spanish so that provider consist educate their patients about their rights to their information.

It's a tool under the privacy rule to get the word out and we are happy to make it available as broadly as possible in hope that consumers will find it both easily understandable and fun to read.  We value a resource center at Med Scape dot org, called Protecting Patients Rights, that document works to ensure that providers have access to important training materials with the right information at the right time, whether it is on a tablet, a smartphone or a PC, provider consist link to OCR's guidance material and tools to help comply with the rules, all available on an easily easy to access mobile platform, somebody told me to say that, I don't know what that access mobile platform is, but those more sophisticated than I, I'm sure that is something good.  We also have training programs available for providers on the Med State dot org site and those are training modules that educate providers about best practices to comply with HIPAA, including mobile device security, privacy requirements, risk analysis and ongoing risk management and of course patients rights, all six modules are available for free, continues medical education and continuing medical education credit.  Let me just say one thing about our enforcement responsibilities because obviously we want to do our best to encourage voluntary compliance and to ensure that providers and others understand their responsibilities and comply.

That said, when faced with    excuse me, noncompliance, we will take enforcement action of getting all choked up about our responsibilities, we take this responsibility very seriously.  In part because of the number of complaints that we received.  In fact, complaints about lack of patient access accounted for a third of the HIPAA complaints that we received, so it's clearly a right that consumers pay a lot of attention to and are worried about protecting.  That said, we also get significant numbers of complaints that alleged noncompliance under the privacy and security component of the HIPAA rules, we investigate those complaints, we work with the providers to see if we can voluntarily remedy the situation, but we do take as I said enforcement action as necessary.

So for example, we have entered into settlement agreements with Parkview Health System which we investigated after employees left 71 cardboard boxes of medical records unattended and accessible to unauthorized persons on the driveway of a physician's home in a heavily trafficked area.  We recently reached a multi million dollar settlement with the New York Presbyterian in Columbia University hospital after lack of technical safeguards resulted in information of 6800 patients being accessible on internet search options, search engines.  And finally with infinity health plan reached agreement when protected information of up to 345,000 people was left unsecured when the plan returned multiple photo copiers to a leasing agent without erasing the data contained on copy or hard drives.  All of these settlement agreements are available on our website because they offer important educational tools for providers about some of the problems that continue to occur, even more than a decade after the enactment of HIPAA and ways in which they can get themselves into trouble and I urge people to be alert to all of the requirements of the rule to avoid these kinds of breaches and problems that can result in real harm to patients and sanctions for the providers who have engaged in the conduct.

Let me just in closing thank you again for the opportunity to be here and say that obviously patients right to access is a critical component of reinventing healthcare delivery by involving patients directly in the management of their care in ever expanding digital age. We're serious about protecting consumers right to access for their health care information and making sure they know their rights we look forward to working with all of you to ensure that the promise of the law becomes a reality as technology improves and as we work together to ensure better health care for all Americans.  Thank you very much.  [ Applause ].

>> Jodi Daniels:  Thank you, Jocelyn Samuels for your remarks..

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