What should be on a PODS - Part 6

Design considerations for PODS:

-          PODS should be in plain language 

-          PODS should have short and simple instructions

-          PODS should have large fonts 

-          Should PODS be written in the patient voice? (e.g. my concerns, my plan, what does it mean to me)

-          How can PODS be culturally sensitive? (e.g., diet instructions, recipes,  community resources)

o   Also, in which areas and when is this needed?

-          How can PODS be language sensitive?

o    dual column - a chosen language and English side by side with same information

o   double sided - English on one side and a chosen language on another

o   patient education materials in multiple languages

o   in which areas and when is this needed?

-          What is the best use of visual communication 

o   Calendar

o   Timeline

o   Chart

o   Images of symptoms

o   Images of medications and related info

o   Images of food

o   Images of resources 

o   Images of contact people

o   Pictures of providers 

-          What is the ideal format? 

o   Paper 

o   App 

o   Patient portal  

o   Ideally this should exist in multiple formats

What should be on a PODS - Part 5

Other things to consider:

-          - Should we consider alternative medicine as a provider if its important to patient and have a section on the PODS for follow up with them?

-          - Should we consider family support as a provider and have a section on the PODS for follow up for them?

-          - Should we have sections on PODS for each “provider”?

-          - Should we have a section for patients to write notes?

-  

What should be on a PODS - Part 4

How should we tell patients about danger signals to watch out for?

-        -   Guidelines in a timeline if the patient feels a certain way on a certain day, they should do x 

-         -  Include visuals of possible symptoms and what to do if have them which may include multiple steps such as first take meds and if that doesn’t work go to hospital

-         -  Traffic light symptoms - green are normal, yellow are minor, red go straight to the ER

-          - How feel now correlated to how the symptom may change and get worse and what to do if it does

-          

      

What about reporting on symptoms in general? 

-          Should we include a self-care log for patients to record symptoms

o   With names and pics of possible symptoms

o   With a visual rating scale

What should be on a PODS - Part 3

What resources do patients want? What from this list would you include?

-          - Websites 

-          - standard patient education information 

-         -  phone number for medical records 

-         -  Community resources such as community centres

-         -  Social network support

-         -  Helpline

-         - recipes, exercise videos 

-           - legal assistance

       - kid friendly activities

        - child care

        - pet care

What should be on a PODS - Part 2

Here is a look at how we can include medication information on a PODS. 

-         Most of the groups at our event agreed that the medications should be presented in some sort of chart with potentially any or all of the following details

o   name of medication

o   picture of time of day to take the medication

o   picture of what the medication looks like

o   picture of dose (e.g., number of pills to take)

o   with check box of am, pm, hs

o   picture of whether the medication should be taken with or without food

o   side effects

o   a reason why to take each medication

o   contraindications and drug interactions 

-          

       Here are some other things to think about:

           - Should the medications be colour coded?

-                    - Should we include a sticker sheet to match the chart to the actual medication bottles?

-                  - Should we include other follow up activities with the medications in a daily chart of time, med/activity, dose/amount?

What should be on a PODS and how should it look - Part 1

Over the next week, I will be posting daily thoughts on different items that we think should be on a PODS and some options for how to include them. 

We would love your input!

Here is the first one - 

What to expect the first week home and beyond - patients want to know how they can expect to feel.A lot of patients are surprised at how long it takes them to fell somewhat normal again and they want to know what is normal. If it is normal for them to feel like garbage for 2 weeks, that is fine. They just want to know.

At our design event, the groups came up with various ways to include this in a PODS.

-         -  On a calendar with maybe an icon to show how you an expect to feel or a note of when you may begin to feel less tired, etc

-          - On a timeline (with pictures?) of how you can expect to feel at discharge, at one week, and at 2 weeks

-          - A picture and description of what success looks like and when it is expected to happen

-          - A list of how do the patient feels now (at discharge) with arrows corresponding  to how the symptom may change into a danger signal (e.g. now have less energy à go to H if can’t get out of bed)

-       -   A list of normal symptoms with icons

The Beyond Words PODS Design Event

This past Thursday, groups of patients, providers, designers, patient relations representatives, and patient education representatives came together to design patient oriented discharge summaries. The day was a big success and the groups worked together amazingly well. After a brief introduction to the project, we got right to work.

The groups rotated through 4 stations, each with a case study of patient's stay in hospital. The groups were faced with the task to be creative and think of the ideal PODS for that patient in 20 minutes. Meet our 4 case studies:

1. Wen-Yang, the 10-year old refugee, new to Toronto with his mom and younger brother who is diagnosed with pneumonia and spend the night in the hospital. Due to mis-communication, Wen-yang end up returning to the ER unnecessarily 2 days later.

2. Lisa, an 87 year-old Italian woman who loses her independence after an unexpected bypass surgery due to chronic heart failure. She cannot keep on top of all the guidelines surrounding her many new medications.

3. George, a 22 year-old international university student from Greece, who is in a car accident and suffers many injuries. He suffers memory loss and has trouble getting back into the swing of things.

4. Jose, a middle-aged taxi driver suffering from kidney failure, diabetes, and obesity among other things. He is in the hospital for something minor and ends up with a hospital-contracted infection.

The solutions that resulted were amazing. They were more traditional discharge summaries that were enhanced with multiple languages and images to make things more clear to patients. They all included key information patients wanted such as phone numbers of who to call with questions and expectations of what to expect in the first week home form the hospital. Almost all of the solutions contained some sort of calendar view. There were solutions that developed apps to connect patients to their care plan, their families, resources int he community, and their doctors. There were solutions that included interactive patient portals with educational videos. There were solutions that came with stickers to color-code your medications,areas for patients to write notes, and checklists for them to keep track of all their follow up plans. There was even one solution that included a weighted placemat that looked like a calendar and held all the patient's pills. If the patient missed a few pills, the next of kn would receive an automatic message.

The Beyond Words project team is going to systematically review all the solutions and designs. I can't wait to see what comes out of this amazing event. Here are some pictures from the event.

What Information Do Patients Want at Discharge?

“If something is important enough to mention at discharge, it really should be written down”

“A discharge form in ‘plain English’ should be standardized”

These are quotes from patients we interviewed. We have repeatedly heard from patients that they want written instructions and studies have shown that patients cannot remember what they are told in hospital and when they have something to refer to (either in written or video format) once they are home, they do much better. 

We have been talking to a lot of patients and they have been telling us what information they would like to be given at discharge. The items listed here are grouped by the number of patients and caregivers who mentioned them. The most popular items were mentioned by at least 10 patients and caregivers and are highlighted in green. The second group was mentioned by at least five patients and caregivers and are highlighted in blue. The third group was mentioned by at least three patients and caregivers and are highlighted in yellow.

-          Medication Schedule

-          How to fill and refill medications

-          Follow up care schedule

-          What to expect the first week home

-          What is normal, what is a minor danger signal, and what is a major danger signal

-          Who to call in the cases of a minor or major danger signal

-          Phone numbers for go-to people

-          Follow up appointments with phone numbers

-          Names of medications

-          Medication side effects

-          When to resume various activities

-          Lists of relevant resources

-          Pointers to additional information

-          List of supports they can expect at home

-          Why they are being prescribed each medication

-          A number to call for prescription issues

-          Diagnosis and diagnoses considered

-          Short synopsis of hospital stay and tests done

From our research, we have also discovered other tips that can help us when we design the PODS.

-        

            -  Put the most important information first

-        -   Simplify the written instructions - use plain language for all content and headings, think about what each thing means to the patient.

-         -  Use large fonts

-         -  Include an illustration of the care/medication schedule

-         - Use other communication besides verbal – text/illustrations

-         -  Include the patient’s voice in the follow up plan and include caregivers as well

-        -  Include a checkmark space for patients to check off what they have completed from their plan

-      

Do you agree with this list? Would you add anything? Share your thoughts with us!

THE CICC INVITES YOU TO A DESIGN EVENT ON PATIENT-ORIENTED DISCHARGE SUMMARIES

We are inviting patients, caregivers, healthcare providers, and designers to attend a design event hosted by the Centre for Innovation in Complex Care. Patients and caregivers will join teams of healthcare providers and designers to work on co-creating patient oriented discharge summaries. What should be on a discharge summary that a patient will take home from the hospital and how should it look?

          When: Thursday, February 13^th, from 1:00 pm to 4:00 pm

         

          Where: Toronto General Hospital, 13^th floor, room 13N 1382

Please email Shoshana Hahn-Goldberg at:

shoshana.hahn-goldberg@uhn.ca

with any questions and to confirm your attendance.

The Good and The Bad of Current Discharge Summaries

At the CICC, we use a "Design Thinking" approach as we carry out our projects. Some interesting research techniques we have used to enrich our understanding of the patient experience at discharge and once they get home are patient experience mapping and cultural probes.

Different from process mapping, patient experience mapping does not only map what happened to the patient during discharge, but also what they were thinking and feeling. What was the experience like for them? What were the pain points?

To learn about what it was like for patients once they got home, we provided them with a journal and a camera to document their experience.

What we learned:

- There are a lot of players in the discharge process and there aren't clearly defined roles.

- Physicians are not well educated on the resources existing in the community.

- Patients are extremely overwhelmed when they get home form the hospital.

- The presence of family and friends makes a big difference.

The discharge summaries currently issued by hospitals are often dense in information, involve heavy use of technical language, and are meant primarily as a tool for hospital to primary care provider communication.

When we reviewed the literature and spoke to patients, we heard both good and bad:

The Good:

- When patients get the summary, they keep it.

- They use it to Google things about their condition or share it with friends.

- They give it to their family doctor. 

- Surgery departments often have very good discharge information packages and they often exist in many languages. They prepare patients for what to expect when they get home.

The Bad:

- Often important information is missing or inconsistent from what happened.

- Often patients do not have a summary given to them before they leave the hospital. If the discharge information is only given verbally, patients do not remember it.

- Often, the patient’s family doctor does not receive the summary in a timely fashion or at all.

- The language used on the summaries is not intelligible to patients.

- Often summaries are put together by someone who is not familiar with the patient.

Above all, patients feel that they would benefit from a ‘patient’ version of the discharge summary. What do you think? What do you do with your discharge summaries? Share your thoughts with us!

Stay tuned to hear more about a design event we are holding on February 13th, where patients and providers will come together to design patient oriented discharge summaries. To get involved, contact Shoshana at shoshana.hahn-goldberg@uhn.ca.

Pictograms From the Developing World

There is a lot to learn from the developing world when it comes to communicating with patients. A lot of the developing world has difficulty with multiple languages and much of the population has low health literacy. In a number of studies, visual aids such as pictograms have been found to aid recall, comprehension and medications adherence which can be effective in enhancing understanding of post discharge instructions, particularly among low-literate patients [1-4]. Given the evidence, countries around the world have adopted pictograms to help improve their discharge processes.

At the Kasturba Hospital in Manipal, India, a group of researchers used pictograms to communicate information about the adverse effects of antiretroviral (ARV) therapy, particularly among the illiterate group. The team designed a set of 20 simple, culturally sensitive pictograms of adverse drug reactions (ADRs) to highly active antiretroviral therapy (HAART). They interviewed 50 hospitalized human immunodeficiency virus (HIV) positive patients on the ARV therapy who ranged from having no schooling to college level education. Results from their study suggest that the use of pictograms can be effective as a counseling tool to improve patient’s knowledge towards the side effects of ARV therapy, particularly among the illiterate and low-literate populations, as well as improve self-efficacy to deal with the challenges associated with adherence to their ARV management [5].

In South Africa, pictograms for prescription medication instructions been have been designed, developed and evaluated in areas with low-literate populations. In one study, the researchers adopted a multistage, iterative process to design a set of local pictograms to communicate medication information among the low-literate Xhosa population in the Eastern Cape--an economically poor region with low literacy rate. The concept of using pictograms to convey medication instructions to patients who could not read was explained. The team surveyed 46 black Xhosa respondents after and found that the use of pictograms were more successful over written text drug labels when communicating medication information. Participants demonstrated lower comprehension of their medication instructions when presented with the text labels. On the other hand, the use of pictograms increased accuracy in the interpretations of the medication instructions and also enhanced better recall among the respondents. The study concluded that the use of pictograms can be effective, particularly if they are developed in collaboration with the target population and cultural influences are taken into consideration [6].

The impacts of low health literacy affecting accurate interpretation and adherence to discharge medication prescriptions were also recognized as major challenges at the Services Hospital in Lahore, Pakistan—where nearly half (48%) of its patients were identified as being illiterate. In the paper, the study team found that an overwhelmingly majority (88% to 95%) of these illiterate patients struggled to interpret the written discharge prescriptions after leaving the hospital. The team redesigned the discharge medication prescription using pictographic images and symbols to convey the information. To evaluate the impacts of the redesigned pictorial discharge prescription, the team conducted a pre/post survey with 100 illiterate patients. Findings showed that the redesigned pictorial prescription instructions demonstrated large relative increases in patients’ comprehension of their medication discharge. Specifically, results indicated that 23%-35% of the participants (depending on the level of counselling given) understood their medication discharge instructions in comparison to 5%-12% of the group when they were given the text written discharge prescription [7].

Here are some existing pictograms of medication and follow up instructions. Let us know what you think of them. Should we use them? Should we change them? Share your thoughts with us!

How can we learn from this? How can we apply this to PODS? Share your thoughts with us!

[1] Dowse R, Ehlers M. Medicine labels incorporating pictograms: do they influence understanding and adherence? Patient Educ Couns. 2005; 58:63-70.

[2] Mansoor LE, Dowse R. Effect of pictograms on readability of patient information materials. Ann Pharmacother. 2003; 37:1003-9.

[3] Morrow DG, Hier CM, Menard WE et al. Icons improve older and younger adults’ comprehension of medication information. J Gerontol B Psychol Sci Soc Sci. 1998; 53B:P240-54.

[4]. Patel V, Eisemon T, Arocha J. Comprehending instructions for using pharmaceutical products in rural Kenya. Instr Sci.1990; 19:71-84.

[5] Dowse R, Ehlers MS. The evaluation of pharmaceutical pictograms in a low-literate South African population. Patient Educ Couns. 2001 Nov; 45(2):87-99.

[6] Rajesh, R, Vidyasagar, S, Varma, M et al. Design And Evaluation of Pictograms for Communicating Information about Adverse Drug reactions to Antiretroviral Therapy in Indian human Immunodeficiency Virus positive patients. Journal of Pharmaceutical and Biomedical Sciences. 2012; 16(10):1-11.

[7] Clayton M, Syed F, Rashid A, Fayyaz U. Improving illiterate patients understanding and adherence to discharge medications. BMJ Qual Improv Report 2012; 1:1 u496.w167. 

Language Barriers, Health Literacy, and Discharge

Language barriers are a reality of the Canadian health care system, particularly in large urban centres such as Toronto, where over 60% use a mother tongue other than English or French at home, and 5% of respective residents report having no knowledge of either of Canada’s official languages. Individuals with language barriers face significant challenges in navigating the health care system, leading to poor self-reported health¹, increased medical errors², poor compliance with therapy and follow-up³ and increased costs⁴. Defined as “the degree to which individuals can obtain, process, and understand basic health information and services needed to make appropriate health decisions⁵,” an estimated 55% of Canadians between the ages of 16 and 65 have low health literacy, and only 12% of those above 65 have adequate health literacy skills. Poor health literacy leads to poor outcomes, especially among the elderly, those with limited education, chronic health diseases, and immigrants with added language barriers.

The period following discharge from a hospital is a vulnerable time for patients. The transition of care responsibilities from the hospital to the primary care provider or from the hospital to the patient frequently results in adverse events, particularly medication errors. Imagine how much worse this can be for patients with language or health literacy barriers. Share your thoughts with us!

If you have been admitted to the hospital in the last year, or have a close family member who was, please consider contacting us and getting involved in the PODS project. Contact Shoshana Hahn-Goldberg at shoshana.hahn-goldberg@uhn.ca

[1] Canadian Institute for Health Information. All-Cause Readmission to Acute Care and Return to the Emergency Department. 2012 June 14. Downloaded May 10 2013 from https://secure.cihi.ca/free_products/Readmission_to_acutecare_en.pdf

[2] Dowse R, Ehlers M. Medicine labels incorporating pictograms: do they influence understanding and adherence? Patient Educ Couns. 2005; 58:63-70.

[3] Mansoor LE, Dowse R. Effect of pictograms on readability of patient information materials. Ann Pharmacother. 2003; 37:1003-9.

[4] Morrow DG, Hier CM, Menard WE et al. Icons improve older and younger adults’ comprehension of medication information. J Gerontol B Psychol Sci Soc Sci. 1998; 53B:P240-54.

[5]. Patel V, Eisemon T, Arocha J. Comprehending instructions for using pharmaceutical products in rural Kenya. Instr Sci.1990; 19:71-84.

What Is the Beyond Words project?

See our project video here.

The Centre for Innovation in Complex Care (CICC), a healthcare innovation hub at the University Health Network has created BEYOND WORDS, a project addressing the patient experience at transition points in and out of the hospital, an issue facing hospitals in Toronto, Ontario, and Canada as a whole.  BEYOND WORDS seeks to improve the communication of information critical to patients and their care. Based on approaches from the developing world, where challenges with literacy and health literacy are high, BEYOND WORDS will use visual communication to bridge the communication divide.

BEYOND WORDS will produce a pictogram-based toolkit consisting of a set of symbols identifying various hospital departments to improve wayfinding on hospital campuses.  The first set of toolkits will be available free of charge to Canadian health care facilities.

BEYOND WORDS will also produce a patient-oriented discharge summary (PODS) designed with and for patients to improve the comprehension of medication and care instructions. The Toronto Central Local Health Integration Network (TC LHIN), recently developed a standardized discharge summary template for the region. The CICC is working with the TC LHIN to include the PODS as a complement to improve hospital-to-patient communication.

If you have questions about BEYOND WORDS or are interested in becoming involved, contact Shoshana Hahn-Goldberg at shoshana.hahn-goldberg@uhn.ca.

ABOUT THE CENTRE FOR INNOVATION IN COMPLEX CARE

The Centre for Innovation in Complex Care (CICC) is a leader in developing, implementing, and evaluating innovative solutions to challenging healthcare issues. The CICC is committed to designing new solutions for healthcare that improve patients’ outcomes and experiences while reducing system cost. As part of the University Health Network (UHN), the CICC is well positioned to leverage the inter-professional expertise of its team that includes physicians, patients, nurses, researchers, engineers, policymakers, and designers. The ultimate goal of all CICC projects is global system impact.

THE BEYOND WORDS ADVISORY TEAM

The Beyond Words Project is being run by the CICC, but it is also being overseen by a multi-disciplinary advisory team. Members include a patient, GIM physicians, an ED physician, pharmacists, designers, engineers, research coordinators, TC LHIN representatives, patient education representatives, and interpretation services representatives.