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Public; Provider; Leader
4/24/2018 6:00 PM

#SuperSHIFTERS Lora Appel

The ability to create initiatives and share them is the nucleus of OpenLab. Located at the University Health Network in Toronto, Ontario, OpenLab is a design and innovation shop dedicated to finding creative solutions that transform the way healthcare is delivered and experienced. Lora Appel, PhD is a Project Lead for From Patients Who Know: A Hospital Handbook.

What can you tell us about the Hospital Handbook?

Our research shows that patients who leave the hospital do not retain a lot of the information they have been given. They can't remember the names of the healthcare providers who treated them. They are given important information and if it is not written down, it is not passed on to their caregivers and they can end up being re-admitted to the hospital. Basically, the Hospital Handbook addresses a problem in communication and how to navigate your hospital stay.

We came up with the idea of working with real users of the health system, which is a focus of OpenLab. For our research, we wanted to include people living in what we call a "Naturally Occurring Retirement Community (NORC)". These tend to be apartment buildings where 30 per cent of residents are seniors, but this occurred naturally, unlike in long-term-care homes where you need to meet certain criteria to be accepted. We went to Kingston, Ontario where one of these buildings exists and worked with over 40 seniors to gather their experiences of living through the hospital system, whether going for an appointment or through emergency services, and seeing what they had learned from the system and what they wished they would have known.

With that input we compiled the From Patients Who Know: A Hospital Handbook. Unlike other resources that are top-down where the medical system is telling patients what they need to know, this Handbook is a patient-to-patient explanation of 'here is what I learned and here are the things that I didn't know that would have helped me'. For example, when you get to the emergency department, we talk about how you are triaged. Some patients think that if they come to the hospital by ambulance, they will get some kind of priority when being admitted, and that is not true. And worse, they then need to incur the cost of the ambulance trip.

Any patient that comes across the Handbook can use it. The concept behind having end users design tools like this is that it can be applied to many sectors.

We provide the Hospital Handbook for free, online. All we ask is that anyone who shares it provides the appropriate credit to the seniors who helped us to create it, and that no one is charged to receive it. If another institution or hospital wants to use it for their patients, they have to provide it free of charge.

What patient safety issues has the Hospital Handbook addressed and why?

Clearly, there are a number of things. Often, patients are unable to recall verbal information given to them during admission and on discharge.  This is the most important information they are getting about their care and they are not retaining it. It is a time where there is a lot of anxiousness and stress involved, compounded by the fact that you are not feeling well. There is an expectation that the patient will go home with some sort of written information that they can look at later, and can ask their family or caregiver for help interpreting it.

The Hospital Handbook has sections where you can write down notes and it prompts you to be both an advocate for yourself, but also to think about questions you should ask the doctor or healthcare team. It is both an empowering tool and a communication tool. It is also a basic directory of where to find what in the hospital. Where are the elevators? Where are the bank machines? The guide includes practical things that aren't easily, or often, communicated.

A side project included in the Handbook is called the Patient-Orientated Discharge Summary (PODS). When you leave the hospital, you are given a piece of paper with clinical information that is meant to be shared between your hospital clinician and primary care provider, yet it includes pertinent things like how often you should take your medication, medications started and stopped, and symptoms you should watch out for. Often, it is written in such a way that it is incomprehensible, and there is no motivation whatsoever to make you want to read it.

What we have created is something that is highly visual; it takes all the essentials and provides it in a way that the patient is prompted to ask, okay did I understand that? It is results in a teach-back moment. That is our goal for the PODS project; to have healthcare providers provide the discharge summary, explain it and have the patient repeat back what they understood. This process allows for better understanding of what to expect once they leave the hospital.

There are a lot of interactive tools throughout the Handbook. There are so many healthcare providers coming and going during your stay—occupational therapists, doctors, nurses, pharmacists and others. You don't really know who is who. We have a section 'Face2Name' where you can write down what you can best remember about someone. Perhaps, it is their hair colour, their accent, or the type of clothing that they wear. You record who they are, what they told you and there is room to draw an illustration of the person as a visual representation.  Then, when they enter your room, you recognize them and know what to expect.

What is innovative about the Hospital Handbook?

The Handbook is co-designed with users, real patients and caregivers, people like you and me who have years of lived experience. The fact that it is paper-based is not innovative, but the way it is designed involving the user from the start to the finish is. We went to Kingston a couple of times to work with this group of seniors to discuss what topics they wanted to include. In most hospital directories, the first page is a welcome message from the CEO. From a patient perspective, they don't really need that. What they want are instructions on free parking around the hospital so their families don't have to pay twenty dollars a day when they come to visit.

Working with patients is an innovative aspect of the Handbook, from the topics, to how to solve problems. There are also elements of humour, so rather than everything being about illness, it is more about how you can manage the system. We have jokes, interesting quotes and tidbits of good information, like 'don't bring your walker because it will go missing". Then there is the basic design of the book, which focuses on known principles, like having white space to break up the copy.

What major learnings helped you to create the Handbook?

From our evaluations, we learned that the existing resources provided in hospitals are unattractive, unengaging, and even if they have the content users don't want to interact with it. There was a strong design focus in making the information humorous, playful and wanting to look at elements where you could learn. However, what we found was that the content still trumps the look and feel, and we need to find a way to satisfy both of these essential aspects. 

Can it be replicated?  Are there other opportunities you can see with this Handbook?

Our goal is to make the Handbook replicable and scalable. We will do this either by creating an online version that people can customize; or an app for next generations that want an interactive digital copy. We are also looking at redesigning the Handbook for specific groups, like indigenous and first nations people.

Moving forward, what is unique about our initiative is that we don't want to necessarily own this; we want to share it so that other institutions can customize it to their needs. We will include a set of principles, such as how to involve patients when developing a section. Down the line we could create a digital library where institutions could drag and drop sections, or "chapters" that are relevant in a more scalable manner.

The initial Handbook is quite broad in scope and talks about a couple of the areas that we know would be important regardless of what institution you are going to. Navigation around a hospital is notoriously bad. In our Handbook we have explanations on how room numbers work. We also talk about the language and jargon used by the medical team; what does it mean? There are a couple of broad topics, but the idea now is to take this book and customize it to a hospital so that the patient is not getting a generic version, but a map of their hospital specifically.

We are also working with the Canadian Patient Safety Institute to evaluate the Handbook. It is very difficult to evaluate a paper resource like this and see that it has a direct impact on the quality of care, or metrics like readmission rates, and length of stay. My background is based in design science and how to creatively, but rigorously evaluate an intervention that is not through traditional means like randomized control trials.

To evaluate the Handbook we are moving away from standardized surveys, to conducting more qualitative interviews, and undertaking usability studies where we provide our Handbook and a standardized hospital directory and ask patients to find relevant information, like where they can find parking, or where they can get their hospital card. We will let them think-out-loud through the process of finding this information and see if it took less time, was less frustrating, or clearer and more enjoyable to use one resource over the other.

How can I get a copy of the Hospital Handbook and who can I contact for more information?

Click here to download a copy of the Hospital Handbook.

To learn more, visit, or contact Lora Appel at