Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and author of the book Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. I also produce and host this podcast series, Health Literacy Out Loud.
Today, I’m talking with Shoshana Hahn-Goldberg, who is a scientist and project lead at the University Health Network’s OpenLab in Canada.
She works with a multi-disciplinary team to discover and create solutions to issues in the healthcare system using techniques that span design, research and operational modeling.
Shoshana manages the project Patient-Oriented Discharge Summaries, also known as PODS, that is being used at over 20 hospitals in Ontario, Canada.
I first learned of PODS from a posting by Farrah Schwartz on a health literacy discussion list. I was so impressed by this discharge tool that I invited Shoshana to be a guest on Health Literacy Out Loud.
Shoshana Hahn-Goldberg: Hi, Helen. Thanks for having me.
Helen Osborne: A discharge tool, boy, that’s a really hard transition. Why in the world did you get involved in working on a discharge summary?
Shoshana Hahn-Goldberg: At OpenLab, where I work, we have open rounds every week where we open to the public and we go through all the projects we’re working on in the lab, and invite new ideas and new projects as well.
A group of us, together with some patients, healthcare providers and patient education professionals, came together and did some patient experience mapping to come up with a new project. That transition from hospital to home really came up as an area where there was a lot of opportunity to create some solutions.
Helen Osborne: I like the way you worded “opportunity.” From what I hear and my own experience as a patient or being around patients, and also all my work in health literacy, it’s a pain, that transition, and it’s risky.
I know that there’s just an overwhelming amount of information as people are still very sick and concerned about going home and don’t always know what to do.
What did you learn about what the problems are in that moment of discharge from the hospital?
Shoshana Hahn-Goldberg: Exactly what you’re saying. People are overwhelmed. They’re sick. They’ve gotten so much information. A lot of it hasn’t been written down for them, so they’re expected to remember it.
Then when they get home, they’re still not really fully well, and they’re expected, they and their family, to really take over their care at that point.
Helen Osborne: It is. It’s one of the hardest times. It’s a really high-risk area, those transitions.
You saw the problem. How did you start working on this opportunity?
Shoshana Hahn-Goldberg: At OpenLab, we use a lot of design methods and a lot of participatory design, where we work together with the people who will be using the solutions to help create them.
For this project in particular, we used the philosophy of extreme user design.
Helen Osborne: I never heard that term.
Shoshana Hahn-Goldberg: It’s where you work with the people who are the most likely to be affected by the problem or the solution that you’re going to create.
In this case, in Toronto where we’re based, there are a lot of people with language barriers, a lot of people who don’t speak English as their first language.
We worked with patients who had language barriers and who had really limited health literacy to learn from them what information was important for them when they transition from hospital to home, how that information should be presented and the process of how it should be taught to them.
Helen Osborne: Let’s take this piece-by-piece. You looked at what information is important, and you also looked at how best to present it. This is patients and families, right?
Shoshana Hahn-Goldberg: Yes.
Helen Osborne: What were they telling you they wanted to learn about?
Shoshana Hahn-Goldberg: Really, five content areas came up as things that were important and that they could act on.
One was “Medications I need to take.”
The second was “How I might expect to feel and what to do.”
For this, it was not really only the things that would worry you and you should do something about, but what’s normal. Is it normal for me to still be tired and in pain for two weeks? If that’s the case, let me know and then I won’t worry about it.
Helen Osborne: Oh, boy. I can relate to that one.
Shoshana Hahn-Goldberg: It’s “How I might expect to feel and what to do,” so both the normal and the worrisome.
“Appointments I need to go,” so those follow-up appointments, whether or not they’ve been booked and the phone numbers if I need them.
“Changes to my routine.” These are things like when I can resume my normal activities, and also changes to my diet or exercise.
Then “Where to go for more information.” Again, it’s other phone numbers and places in the community where they might be accessing supports or be able to call if they have questions.
Helen Osborne: That list is really comprehensive and thorough. Were there other tools doing something similar? Are you replicating what’s already out there, or trying something new?
Shoshana Hahn-Goldberg: I think there are tools and programs that have been created for the transition from hospital to home.
A lot of the hospitals are providing some of these pieces, not exactly in this way and not with the plain language and design of the tool that really promotes a process of conversation and teach-back so that the patient and their family and healthcare providers discuss the plan together before the patient goes home.
Helen Osborne: Wow. I’m getting more pieces of this and it just seems so clear. You talked about the plain language part, design and then that process, that teach-back or bringing in more health literacy principles.
Let’s talk about all three. The plain language part, was that a challenge for you to word all this information in clear ways that people can understand?
Shoshana Hahn-Goldberg: In the tool, like the headings, we worked with patients and families, healthcare professionals and patient education professionals to make sure that the language was focused in that way.
I think the headings actually encourage the healthcare providers that are filling it out to also continue to write and talk in that way.
That’s definitely been a piece that each hospital that takes this tool, adapts it and implements it. They have to do some training and promoting the use of plain language when they’re completing the tool.
Helen Osborne: This tool is widely used and available, and we’ll talk about that. The headings are almost like the subject matter headings as you’re explaining it to me and our listeners.
Shoshana Hahn-Goldberg: Yes.
Helen Osborne: That’s the plain language piece, and I’m not minimizing that at all. I looked at your tool online. There’s a huge design element. Can you talk about that?
Shoshana Hahn-Goldberg: We really thought about the best practices in health literacy and design, and have included things in the design that really promote the use of conversation and also making sure that the right information is provided.
Some of the things you might notice are the use of checkboxes, such as a checkbox that says, “I understand my medications. They’ve been explained to me,” or a checkbox that shows whether or not their follow-up appointment has already been booked for them.
We’ve used a lot of pictures and symbols to help cue and also for patients who do have language barriers or difficulty with literacy.
Then there’s always space for notes so that the patient and family are encouraged to write down questions or add in things in their own language as they go through the information with their healthcare provider.
Helen Osborne: I’ve seen your website, and we’ll certainly have your URL and link on your Health Literacy Out Loud web page. I also watched videos of people filling this out. That form that you’re talking about, that master form that people can adapt, is just one side of one piece of paper?
Shoshana Hahn-Goldberg: It can be, but it definitely does end up sometimes being longer, depending on how complex the follow-up information and instructions are.
If you have many medications that can keep getting added or a lot of changes to your routine, we might end up stretching over one page.
Helen Osborne: Boy, what a contrast to discharge forms that I’ve been given or seen as someone I know is being discharged. It’s in this teeny font and goes on for pages and pages in words that, at that moment, I’m not even thinking about because they’re so technical.
This one looks attractive. It has the whitespace, pictures and the interactive element with the checkbox and place to write notes.
In your studies and your work on this, what’s the process of introducing this to patients and families and then using it in clinical practice?
Shoshana Hahn-Goldberg: A big part of this tool is its adaptability. Any hospital that wants to implement it can take what we’ve learned and the guidelines and they can use the tool, or they can tweak it to make it fit with their own processes.
Helen Osborne: Is that available worldwide or just in Canada?
Shoshana Hahn-Goldberg: It’s available worldwide.
Helen Osborne: Perfect.
Shoshana Hahn-Goldberg: We definitely have hospitals that have reached out from other countries. The tool and all the information is on the website. It’s all Creative Commons, which means that anyone is welcome to take it and adapt it with the understanding that whatever they create be open and shared with other people as well.
Helen Osborne: Wonderful. This moment might be a good time for you to mention what that URL is.
Shoshana Hahn-Goldberg: Our website is www.PODS-Toolkit.UHNOpenLab.ca.
Helen Osborne: Perfect. That will be on the website, too, with this podcast.
That’s amazing. You created this tool. It looks reasonable to do. It certainly makes a lot of sense, and it’s amazing that it’s widely available.
What’s it like when someone is actually using this with a patient? Have you seen that or been aware of what that process is like?
Shoshana Hahn-Goldberg: Those videos that you mentioned on the website all highlight three different hospitals using it in different ways. Hospitals really have adapted it to their context and process in different ways.
Sometimes there might be a patient family team meeting where they use it as a structure to fill out together.
Other settings might have the healthcare team really bring in all the content, and then a member of the team goes through it using teach-back with the patient and their family, giving them an opportunity to ask questions and add things in.
There are a few hospitals that have really left it to the patient and family to complete on their own, so it’s almost like a workbook.
Every time they come into the room to do teaching, they’ll say, “Why don’t you pull out your PODS? You can use it to write down the things I’m teaching you.”
People really do use it in different ways.
Helen Osborne: That’s neat. All of those are fine. There are no rules on this one. Use it in whatever ways work.
Shoshana Hahn-Goldberg: Yes. There are the guidelines on what the key content, design features and process elements are, but then how you adapt that to make it work in your context is a really important piece of it as well.
Helen Osborne: I love the fact you’ve mentioned teach-back in there a few times. That’s an underpinning of health literacy. It’s the plain language, the interaction, doing things together, the collaborative model and the teach-back. I love that you’ve brought in all those pieces.
This sounds great on paper and as we’re talking right now. What are you learning from practical experience? How well is this working?
Shoshana Hahn-Goldberg: It’s working really well. Here in Toronto, a few years ago, we ran a community of practice of eight hospitals that implemented it at the same time and met monthly to learn from each other.
We have had great support from the Ministry of Health and various organizations within the healthcare system here to then expand that and run another community of practice at hospitals across Ontario.
It’s been taken up as part of a bundle by a national health system organization as well, so it’s being spread even further across Canada.
Helen Osborne: It’s so seldom that I hear about a tool that has so much positive reaction. Is there a downside to this?
Shoshana Hahn-Goldberg: I should mention that all the hospitals that have implemented this have all chosen to do it on their own. It’s not something that’s been forced on anyone.
It’s all people who are going into this knowing we have an issue with our transition from hospital to home and we want to find some solution to help work together with patients and families to create those transition plans.
We haven’t had so many cases where there’s been resistance. There have definitely been some cases where it’s added a little bit to provider workload, but once you work it into your everyday process, for the most part, if it does add, it’s very minimal.
Everyone is doing this kind of teaching anyway, just not necessarily in a consistent way that leaves the patient with something to take home.
Helen Osborne: It sounds like you’re actually structuring that interview or conversation in some ways.
Shoshana Hahn-Goldberg: Yes. We’ve found cases where it actually ends up reducing workload, because now everything is a little bit more consistent.
Helen Osborne: This is terrific. I’m really impressed. I’m more impressed now than I was when I just looked at it by myself online.
What would you like listeners to take, learn or do from all you’ve experienced and so generously offered with this tool?
Shoshana Hahn-Goldberg: Definitely I would encourage people to look at our website. There’s also a link on the Contact Us page to either send us a message or join Quorum. It’s a quality improvement discussion board where we have a group of hospitals and people who have been involved in implementing it or who have already done it. People share and learn from each other, so check that out.
Helen Osborne: That’s great. Shoshana, thank you so much for being the lead and taking the lead on this amazing project of the Patient-Oriented Discharge Summaries, and for sharing it with those of us on Health Literacy Out Loud who I hope will go forth and look at it, try it and share it with others. Thank you so much, Shoshana.
Shoshana Hahn-Goldberg: Thanks for having me, Helen.
Helen Osborne: As we just heard from Shoshana Hahn-Goldberg, it’s important to communicate all aspects about health in ways people can understand. In this project, it certainly includes that transition and discharge from hospital to home. But communicating about health is not always easy.
For help clearly communicating your message, please take a look at my book Health Literacy from A to Z. You might be especially interested in Chapter 12 that’s about forms and other reading-to-do documents.
Health Literacy Out Loud podcasts come out every few weeks. You can get all the episodes automatically, for free, by subscribing at www.HealthLiteracyOutLoud.com.
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Until next time, I’m Helen Osborne.