Case Study: Primary aldosteronism plain language brochures
Purchasing and applying the standard
Enliven Victoria purchased the ISO Standard in October 2023. The brochures werecompleted in January 2024 using the standard.

What was the problem or issue we were trying to tackle?
We were approached by Monash University and the Hudson Institute of Medical Research inAustralia to create some plain language resources about primary aldosteronism. This is acondition where the adrenal glands produce too much of a hormone called aldosterone. Thiscan lead to sustained high blood pressure, cardiovascular damage and other illnesses. The
condition can be very serious and in some cases treatment involves surgery.
The university wanted to raise awareness of the condition and encourage people with highblood pressure to get tested. This project was to form part of a research study to increase
testing, diagnosis and treatment of this illness. The condition is not well understood, andtesting rates are low.

How did we gather information about the problem?
We reviewed current information about the condition and we liaised closely with the researchteam, which included clinicians. While information was available on the internet, it wascomplex and not easy to find or understand.
The research team identified the need for plain language resources to improveunderstanding and increase testing rates and they had data to support this need. Doctors
also needed plain language resources to help them explain the condition, the risks
associated with this condition, the multiple tests that can lead to a confirmed diagnosis andthe treatment options. The research study needed to give people with high blood pressure
information they could use to make informed decisions about their health.

What was the scope of our project?
The scope was to produce 3 plain language resources for printing:●●●Understanding primary aldosteronism
Testing for primary aldosteronism
Treating primary aldosteronism

Doctors were going to give the brochures to their patients with high blood pressure in their
medical clinics. We were asked to include community testing of the resources while they
were being developed and for the final product. It is important to note that we always
community test with multicultural communities because Australia is one of the most culturally
diverse countries in the world.
Readers needed to be able to find the information, understand the information and use it todecide whether to get tested or treated if a positive diagnosis was made.

How did we apply the plain language principles?
Principle 1: Relevant
Each brochure was designed to be relevant to the reader, at each stage of their journey.

Case Study: Primary aldosteronism plain language brochures●●●People with high blood pressure are at risk of primary aldosteronism. Our first
brochure was aimed at these patients, to increase their understanding of thecondition and of the need to get tested.
If a patient was at risk of having this condition, the second brochure provided thesepatients with the details of what tests are needed, what the tests tell the doctor andwhat they involve.
If testing confirmed that the patient has primary aldosteronism, the third brochureexplained the treatment options so that these patients could make an informed
decision.

Principle 2: Findable
We used clear and meaningful headings and sub-headings. We used images to help withunderstanding.
Because there were multiple tests for patients to go through to get to a final diagnosis, weused a table format to display this information. The table included the name of each test,
details about the test, how long it takes, what happens if the test is positive and what
happens next. This was designed to allow the patient to know exactly where to find particular
information about each test as they progressed through them.
Information in all brochures was presented in chronological order and we ensured thedocument met accessibility standards.
Principle 3: Understandable
We removed words that were unnecessary technical, medical or unfamiliar, and we
explained those terms that the patient needed to know. We used familiar language as well aslists (dot points) and numbered steps.
The brochures were sometimes lengthier than the information that was available on theinternet but it is important to explain concepts that the reader needs to know about. Whenfocusing on informed consent for medical interventions, the information needs to becomplete and understandable for a person to use it to make an informed decision.
Principle 4: Usable
The brochures were to be given to people with high blood pressure so that they could use
the information to decide whether to be tested or treated. The information was to bepresented to patients in chronological order and as needed. For example, the brochure
about treatment was only to be given to those who had a positive diagnosis. Following thefirst 3 principles helped us to make the documents usable.

How did we plan this project?
We met with the research team coordinator who provided us with details about the study andabout the scope of the project. We assigned a plain language officer to apply the ISO Plain
Language Standard to the brochures.
We assigned time to scope the information available on this condition and to verify theinformation with the clinical team. We recruited 2 community testers early in the process.
One had recently migrated to Australia with some limited English proficiency and knowledgeof the Australian healthcare system and the other had been in Australia for a few years andCase Study: Primary aldosteronism plain language brochures
could speak and read English well. We prefer to use 4 community testers, but the budget
only allowed for 2.
We set up milestones for the plain language officer and research team coordinator anddecided how many reviews the clinical team would need to verify accuracy of our content.
We set out a timeframe for the project and assigned additional resources such as brochuredesign. The evaluation of the brochures forms part of the research study and was not in
scope for our contract.

So how did the project go?
The project went well but we did have some timeframe challenges. The clinical team needed
more clinical expert reviews than originally considered, which delayed the project by amonth.
It was vital that the clinical team felt comfortable with the content and with our rationale forchanging terminology. Using the standard was particularly useful here and gave us a soundbasis for our choices. One example was using a table in the Testing for Primary
Aldosteronism brochure. At first the clinical team was not convinced that this approach was
best. Applying the standard and using community testing showed the team that the table
helps readers to find the information they need. The additional reviews by the clinical team
were vital in verifying the accuracy of the information.
What did we learn? It’s important to understand how much your customer or client wants tobe involved in the plain language conversion process. A co-design process with clinicians
and community testers may have been more resource intensive but would havehelped in raising their understanding of the 4 principles and reaching consensus
quicker.

What outcomes did we achieve?
It’s too early to say whether the brochures led to increased understanding, uptake of testingor earlier diagnosis and treatment. This will form part of the broader research study.
Our community testers did help us to improve the brochures by highlighting where theywould need more explanation or information and if there were terms or concepts they did notunderstand.
●●●

They understood the condition and the different types of primary aldosteronism.
They knew what tests would need to be performed, why and how the tests wereconducted, and what the tests told their doctor.
They understood what treatment options were available for the different types of thecondition.

Here is some final feedback from our community testers, in their words.
-Tester 1: “I loved these. I can see the previous feedback was taken into account(that makes me happy). Simple explanations and so easy to understand. I didn't
need to read it again to understand it. Layout is lovely and colours are just enough tonot distract from the info. My son understood this all at first read, he is 13!”
“Brochure 2 as a table looks great and straight to the point. People can skim throughit and choose what they want to read when they need it… to give info to someonethat only wants to know about one test at a time the table is better. They lookamazing and are easy to understand, and will be easy to interpret when need be.”Case Study: Primary aldosteronism plain language brochures-Tester 2: “design is really awesome and no changes needed to the text. You did very
good work.”“There were 2 versions of brochure 2. One of them is a TABLE and the other is just
TEXT. Both are good. Brochure easy to understand and you mentioned details as
well. But I like more Brochure 2 TABLE. It’s more look good and easier to understandas well. I can explain also my friend and family and community also. It’s more helpful
for us. Thanksa lot. I am hoping in future we will get more useful information
about things related to our body and issues like this. Thanks again.”🙏