Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and your host of Health Literacy Out Loud.

In these podcasts, you get to listen in on my conversations about health literacy with some pretty amazing people.

Today, I’m talking with Dr. Susan Woods, who is a seasoned healthcare and technology executive and has broad experience spanning private and public sectors.

She not only is a general internist, but also a consumer informatics expert and Director of Patient Experience for the Connected Care office at the Veterans Administration.

Sue’s work focuses on technology to engage patients and their families in health and healthcare. One way is by letting patients access notes in their medical records, otherwise known as OpenNotes.

Welcome, Sue.

Susan Woods: Hello, Helen.

Helen Osborne: My doctor’s office is slowly going digital, and after some appointments I may get a printed summary and sometimes I go to the patient portal to see my lab test results. Until you and I started planning this podcast, I really was clueless about OpenNotes. Do tell, what are they?

Susan Woods: OpenNotes is a term that was coined by some researchers, Tom Delbanco and Jan Walker, in Boston at Beth Israel as part of a Robert Wood Johnson Foundation project. It means getting access to clinical notes, doctors’ and nurse’s notes, electronically and securely through a patient portal.

Helen Osborne: The exact notes that they’re writing or some other version?

Susan Woods: Yes, absolutely. You talked about patient portal practices and hospitals going more electronic, and that’s exactly happening as part of a variety of factors that are driving that.

It’s rapidly increasing the number of healthcare providers who have electronic records. You need the electronic records in order to then push out healthcare data from that record into the patient portal and put it into the hands of that patient.

Helen Osborne: I’m just curious about this from two sides. Do I really want to know what my doctor is writing about me, and does my doctor really want to know that I’m reading it? Is this a good thing, this OpenNotes?

Susan Woods: This is a great thing. I’m really speaking on behalf of patients and providers and people everywhere. First of all, it’s actually a legal and civil right to get access to your health record. A lot of people don’t know that, including health professionals.

Many people have heard about HIPAA, which is a law that talks about privacy and security, but actually the “P” in HIPAA means portability.

Helen Osborne: Can we just say the whole thing?

Susan Woods: It’s Health Insurance Portability and Accountability Act.

Helen Osborne: Not all of our listeners are from the US. This HIPAA thing is just a weird thing and we’re all having to deal with it in the US. Are you saying this is part of HIPAA, that we can be reading our own notes?

Susan Woods: Absolutely. Many countries have similar laws and regulations. A lot of people, when you go into an office, you tend to have to sign papers that they disclosed it. People think it means keeping data away from you, but it’s a little counterintuitive. It actually means that you have access to the data.

Helen Osborne: Tell us, why is this such a good thing? You’re a zealot about it now. You weren’t and now you are. Why?

Susan Woods: Let’s just say from the perspective of the consumer, the person, the patient and the family for a second. First of all, people have been trying to get access and have been getting access to their records for some time.

Not everybody, but many people go the traditional way, which is the Release of Information Office. You have to sign and request the information, whether it’s lab tests or notes.

Unfortunately, it also now often costs money. Hospitals and practices can charge you for that and that puts a lot of burden just in physically going there and getting them.

Helen Osborne: I remember a time I was trying to get some of my mother’s records when I was her person working closely with her in her last years. I got such grief from the professionals. It seemed liked they didn’t really want to share this with me, so it was more attitudinal, too.

Susan Woods: If you just think about health records, whether they’re on paper or electronic, traditionally, they have been for the health professionals themselves.

They’re a legal document. They’re a record. You go back and look at them to provide continuity of care and you exchange them with specialists, so it’s really a document that’s been really internally used. They’re also used for financial reasons and justification and legal records.

The person who all of that information is about is the person who can benefit potentially the greatest from having that information.

Helen Osborne: Of course. That makes total sense.

Susan Woods: The reality is that people do want access to their information, but not everybody.

Many surveys and studies have looked at this and have found that an overwhelming proportion of people say, “Yes, absolutely, I’d love to have access to my information,” and then many people do.

There is a physical challenge to doing that in person and a cost. Of course, your time is also a cost.

The electronic records now have given us this unprecedented ability to exchange that data for people sitting on their couch.

Helen Osborne: That’s remarkable. I’m curious. Just clue us in. You’re a doctor. Tell me about the doctor’s perspective first. What’s it like writing a note that you know a patient is going to be reading?

Susan Woods: I have just a little bit of story. I’ve been at the Veterans Health Administration for several years. We were actually one of the first organizations to start testing OpenNotes. We didn’t call them OpenNotes at the time, but in 2000, we had over 7,000 patients at several facilities who could securely log in to a website and really get access to all the VA notes, test results, etc.

I do remember, when I first learned about it, it took me by surprise that we were actually doing it, but also it does challenge you. Again, it’s not typically been what the notes are all about. It’s a new paradigm, it’s a new way of thinking and you actually ask the question, “Is there anything in that information that’s going to harm?”

Helen Osborne: What if you say somebody is obese or might have cancer or something?

Susan Woods: Those are the kinds of things that you worry about. Did I use language that people took in a way?

It’s like when you send an email. Sometimes it doesn’t go over correctly because it’s written. Your emotions aren’t in there, so you worry about whether a patient may misconstrue what you’re saying.

The other issue is, when you’re doing a test, you have all kinds of worries, like “Could this be something terrible?” That’s how we’re trained. Sometimes we’ll write that in the note and we worry.

Again, step back from that patient’s perspective. If you’re actually thinking about that and if you’re worried about that, that information is about that person. Shouldn’t you be telling them? Shouldn’t you be communicating?

In other words, and what patients have told us, “Tell me what you’re going to write and then write it. Don’t write something that you haven’t communicated to me.” There is a mindset that has to be modified a little bit.

Helen Osborne: You obviously are a big proponent of it now, so somehow you got past the hurdle. Just give us a story and example from the patient or family perspective. What’s it like for them to read this?

Susan Woods: I actually studied this when I went to Portland, Oregon, and did primary care for several years. That was actually the facility that had the most patients who had access to their notes from 2000 to 2010. I brought in and did focus groups and did a qualitative study.

At the beginning, I primarily was positive about it, but I was also worried. I was worried did it harm? Did it stress? Was there anything that was not good?

Helen Osborne: What did you find?

Susan Wood: I found that people were overwhelmingly positive. Again, these were people who looked at those records at least two times, but they told us story after story, like, “It really helped me remember things,” “I felt more in control,” “I was better prepared when I did go in and talk to the doctor,” and, “I was able to print these out and share the data with my other providers outside the VA health system.” Again, they were overwhelmingly positive.

I asked, “Were you stressed when you read it?” and there were two kinds of comments. One was, “Yes, I got a little stressed when I read that I needed to lose weight or that my doctor wanted me to do this, but I would rather have that information than not have that information.”

Helen Osborne: That is so neat to be learning that. I can understand your enthusiasm about it. Hearing you describe it, it sounds like that model we’re all working toward of transparency, patient engagement and the patient at the center of the healthcare. It sounds like it’s doing all that. That’s neat.

OpenNotes are not widely available yet. They’re available through the VA system and some other facilities, I gather, but they’re not universal across the US.

Susan Woods: No. There are large organizations that are sharing notes and some very important organizations who are leaders, such as Kaiser.

Helen Osborne: It might be coming soon? Even though my doctor’s practice is a slow adopter of this, maybe someday I’ll even be able to see this.

Susan Woods: Absolutely. There is a bit of a ground swell and it’s increasing, particularly in the Northwest. There is a consortium that’s going on right now. All of the large health systems in Oregon have gotten together and said, “We’re going to do this.” There are some other parts of the country, and there’s a website called www.MyOpenNotes.org.

Helen Osborne: We’ll have that URL on your Health Literacy Out Loud web page. That’s great. That’s wonderful to hear.

Our podcast listeners all care about health communication, whether they are clinicians, public health or librarians, or whether they’re in the US or worldwide. What can we be doing to get some of this goodness that you’re learning about OpenNotes?

Susan Woods: I think there are two things. One is to be advocating. Many systems, even smaller practices, have patient portals, but as we talked about, many of them don’t have this capability, haven’t built it in or haven’t turned it on, so it’s advocating for that.

Transparency leads to trust, and trust leads to better communication and better outcome, so it really behooves us all to be advocates.

You and your healthcare delivery system, whether you’re working for the system, are a member or a user, advocate and ask about it.

Helen Osborne: You’re inspiring me to do that.

Susan Woods: Great. The other thing is building in better documentation and communication in the notes. It’s important for all health providers and clinicians. It’s not just a verbal communication that we need to do a great job on. It’s also our written communication, so we could be more patient centered in our secure emails and in our notes.

That doesn’t mean you need to make a note that’s not a medical note. It’s still going to be a medical note. There are still going to be terms in there that people don’t understand, but when you get down to the bottom of assessment and plan, be thinking about helping clinicians make some nuance changes in their documentation. Take the judgment out of that note.

Other than that, if you’re writing an assessment, keep at the front of your mind that the patient or family member is also going to be reviewing that, so write to them as opposed to about them.

Helen Osborne: Those are wonderful principles. I was thinking about the health literacy part of this. If these really are medical notes, you’re going to be using some complicated terms, but the fact that you’re writing to people and not just about them, that’s certainly going a long way to bring in the patient in the patient’s notes.

Sue, thank you so much for all you are doing and sharing this with listeners of Health Literacy Out Loud. You’ve inspired me. I should go talk with my doctor’s office about maybe someday I will be able to access my own notes too.

Thank you for being a guest on Health Literacy Out Loud.

Susan Woods: Thank you very much. It’s been a pleasure.

Helen Osborne: As we just heard from Dr. Susan Woods, it’s important to talk with patients, not just about patients. But doing so is not always easy.

For help clearly communicating your health message, please visit my Health Literacy Consulting website at www.HealthLiteracy.com. While you are there, feel free to sign up for the free monthly e-newsletter, What’s New in Health Literacy Consulting.

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Until next time, I’m Helen Osborne.

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