Meet MamaRisk, our quick risk hereditary cancer assessment tool
In this post I will explain the journey development of one of our products for our patients and clinicians.
Mamarisk, our digital product for hereditary cancer risk assessment and referral guidance for hereditary cancer in an easily accessible and user-friendly format, was considered for me one of the top five products released by Genomika Diagnósticos. But let's begin for the start…
What is the problem ?
Hereditary cancer is responsible for up to 15% of cancers, caused by genetic mutations inherit from a parent and run in family. If we remember of our biology classes, it's that cancer occurs through the uncontrolled growth of cells. Mutations(changes in DNA) increase the risk of cancer, when there are harmful changes in genes and those harmful changes control the growth and division of cells and prevent them from doing their task effectively then cancer can be caused.
Genetic testing is a possible tool nowadays used for checking some inherited changes in genes. Genetic irregularities might have some effects of developing the disease. But, harmful irregularities in genes increases the chances of developing cancer. Through genetic testing, your doctor can estimate the risk of developing cancer in a lifetime. For that purpose, they check for the specific changes in your genes, chromosomes and proteins.
Cancers that comes under hereditary cancer may include:
- Breast cancer
- Ovarian Cancer
- Colon Cancer
- Thyroid Cancer
- Prostate Cancer
- Pancreatic Cancer
- Melanoma
- Sarcoma
- Kidney Cancer &
- Stomach Cancer
To diagnose these cancers at an early stage genetic testing is used. Genetic exams helps you to learn your risk for a particular disease and helps you to find the genes that can be passed and can increase the risk of cancer to your children.
To diagnose these cancers at an early stage genetic testing is used. Genetic exams helps you to learn your risk for a particular disease and helps you to find the genes that can be passed and can increase the risk of cancer to your children.
Ok, so we know that genetic testing is clinically available, in an early stage, as a tool for preventive checkup for people that want know whether their genetic contribution to the development of cancer. However, limited population is aware of such tests.
The healthcare professionals, laboratories and policy makers in Brazil are struggling to find effective strategies to communicate genetic risk information and, at the same time, to enhance individual empowerment and shared decision making in this field. In Brazil, there is substantial heterogeneity in insurance coverage for genetic testing. Although these tests are available at private medical offices and clinics, there are specific guidelines for reimbursement of those tests in private insurance companies, or may not be covered at all.
For instance, I bring one of the guidelines published by National Health Agency (ANS), which specifies every two years, the updated requirements for people that wants to perform a genetic testing covered fully by the healthcare plan or insurance coverage. The following is for the hereditary breast and ovarian cancer:
One or more of those criteria must be followed by people and respective geneticists, in order to have the genetic testing fully covered. It is clear that having all these at the back of our mind it's not an obvious and easy task. Furthermore, it is quite common that people don't know whether genetic testing is available or why it's important to have the information earlier to have a preventive and predictive treatment .
In addition, the laboratory, who performs the exams, needs to follow check-up procedures through the insurance company in order to have the patient exam approved and covered 100%. One of the checklists it's to have one or more rules at the ANS guidelines in accordance. Many people feel frustrated, when coming to the lab and receives a negative answer from their insurance because they didn't match the minimal criteria for the disease being analysed by genetic testing.
According to the healthcare scenario, we will present the related actors and their journey through breast cancer genetic testing.
Based on the generative user research we gathered, we created two user personas that capture the essence of our target users. Meet Julia and Marcia!
At Genomika we started to define our main problem statement, after several discussions with our CEO at time, who was also a doctor:
People don't know or don't have the information to take proactive actions related to their health. Based on family history and genetics, following scientific and validated clinical guidelines, it is possible to people evaluate their risk for hereditary cancers, and have clinical evidences to look for clinical genetics services.
Our product vision
At the time , the NCNN (National Comprehensive Cancer Network) has published clinical practice guidelines, which provide recommendations for some of the key cancer prevention as well as supportive care considerations. The intent of the NCCN Guidelines is to assist in the decision-making process of individuals involved in cancer care — including physicians, nurses, pharmacists, payers, patients and their families — with the ultimate goal of improving patient care and outcomes.
These guidelines are decision tools that are created by doctors to explain a disease and determine the best way to treat a patient, depending on their diagnosis, disease stage, and other factors, such as age. These resources could help doctors make decision, by explaining the pros and cons of each option.
At the time, genetic testing for breast and ovarian cancers were very familiar for patients and doctors, specially after the famous actress Angelina Jolie' 2013 op-ed breast mastectomy, based on her heightened breast cancer risk development confirmed by a genetic testing.
Our main challenge at time was how we could help people to predict their personal risk for breast cancer. Following the journey depicted at the figure above, we could provide some tool that could be extremely useful in identifying whether or not you need additional screening and testing above what is recommended for the average woman.
We knew that there were several clinical guidelines such as NCCN practices, but it was often difficult to understand it or interpret it. Furthermore, it wasn't accessible. After several interviews, we came to the conclusion that risk assessment tools in an easily accessible and user-friendly format could help patients by enabling them to have information about their breast and ovarian hereditary cancer risk assessment, referring them to look after her doctor or a genetics clinician specialist.
Our product vision came to life.
Mamarisk, our MVP.
Our initial product development has started in 2016. After several client interviews, we have used the NCNN guidelines as a start point for building our first MVP. We decided to focus on breast, ovarian and prostate cancer, since at the time, it was one of the most popular exams.
The MamaRisk app was a cancer risk assessment tool for patients and clinicians , which provided a framework of questions about their hereditary cancer conditions, and resulted in a risk assessment report that could refer patients to clinical genetic services (the geneticist specialist persona illustrated above).
Our product was a web app in a mobile-friendly-format, therefore it could be easily accessed over the internet, and the reports generated based on anonymous information , which could be saved, e-mailed or printed. Simples, reliable and time-saving.
To take the people's attention and reduce the chances of abandon of concluding our quiz, we put a virtual assistant represented by Doctor Genomiko, a welcoming doctor who guided the patient through all the questions. After answering all the questions required (based on NCNN breast and ovarian cancer guidelines), evaluating the scientific stablished criteria, the patient would be recommended to look after clinical genetics services, due to his potential higher risk to a hereditary breast, ovarian or prostate cancer according to the guidelines.
The questions are based on the clinical guidelines(NCNN). Doctors could use the tool to determine whether you should be tested for one of the hereditary cancers.
Our guidelines was translated into a simple form with many loop and if-else clauses.
Our key features
- Quick and intuitive cancer risk assessment tool which generates a report based on anonymised patient and family history information
- Option to save, print or email risk assessment reports
- Ability to set default email address or fetch from his social accounts (Google and Facebook) for receipt of emailed reports
- Succinct reference guide for specific hereditary cancer conditions
- Links to published guidance and peer-reviewed literature
- Glossary of genetic terminology and concepts
- Links to patient information leaflets and useful websites
Our first focus customers were all our lab staff team , which could give us several insights. We also had people outside testing our app, where we used specific tools for evaluate the usability and language used at our app.
More than 40 staff members answered our feedback quiz, where we asked about their impressions about the app. It had a positive feedback!
- 62.5% would take the generated report to his physician
- 50% had positive result for the genetic services , and 75% reacted positively about the usefulness of the reports and would share the app for other people to use them.
Our interactive process for the product development was selected as study case for the IHC 2016 Symposium!
MamaRisk, refurbished !
At 2017, we received a challenge from our marketing team for the breast cancer awareness month, marked in Brazil and several countries across the world every October. As a clinical genetics laboratory, it was important for our marketing position , our engagement on activities that could help to increase attention and support for awareness, early detection of this disease.
Our challenge was to give a new fresh design for our app, optimize our decision tree quiz , whereas to get a result , the user should navigate through all the questions (mitigating the risk of the user abandon the app before the result) and remove any barriers for our users starting answering our questions.
For about two months we have worked hard with our marketing team, which was close to the final users, collecting several feedbacks through our Google Analytics analysis and UX feedback interviews.
We also updated our decision tree algorithm, enabling it extensible and configurable at our website, this made possible extensions and new decision trees for other rare diseases/ tumours.
Our tech stack was using Python + Django + Celery (for async emails and reports construction). For frontend we chose Angular JS, enabling a fluent flow during the app. It was a positive decision instead of going to a IOS/Android native application. Using mobile friendly css guidelines, we could emulate the same experience of a native app (we brought large and responsible buttons).
Our relaunch!
We relaunched our renewed product app at one of our marketing campaigns during the breast cancer awareness month, resulting in more than 3000 quizzes answered in a period of three months.
Final remarks
Great , but what is the current state of our app ? Our growth rate of course was after sustained by our on-line campaigns (ads , instagrams) and organic searches. But funny to tell, since it was not our main product at the lab, we put it aside it for a while. Our guidelines wasn't update, as new NCNN becoming released. It stayed on-line until 2019, where several geneticists were complaining at Genomika about patients coming to their medical offices with our outdated risk assessment reports (based on NCNN 2016 guidelines). We put it into maintenance, unfortunately until now (at the time of this post).
Some interesting insights during the development and post-morten of Mamarisk.
- The vision plays an important role in bringing a new product to life: It acts as the overarching goal guiding everyone involved in the development effort. Equally important is the product strategy, the path chosen to attain the vision. Without a shared vision and an effective strategy, people are likely to pull in different directions, and the chances of creating a successful product are slim. While vision and strategy are key, describing them can be challenging.
- During the developing process, we moved through the lean feedback loop (build, measure, learn) making design improvements and increasing the usability of our MVP based on moderated usability test, a/b test, and preference testing to finally deliver Mamarisk and its core features.
- Digital products may die by lack of focus and attention. Yes, this specially occurs when it isn't the core product of our business. Remember we are a laboratory, and MamaRisk was a support product to educate patients and doctors about the importance of genetic testing and services.
- Healthcare lacks good solutions for preventive treatment and checkup. It will be more explored after the pandemic explosion of COVID-19. People will care more about their lifestyle and health.
- Technology stack can be decisive for your MVP ramp. When we decided going by web based solution instead of a native app, we saved time and money (costs of developing native platforms and hosting at those mobile stores). We emulated the same experience of native app using cross-web apps using web-components (Angular JS , React, and several other frameworks).
Special thanks
I'd like to mention some people who helped us during the product development of this amazing and important app.
- Doctor João Bosco Oliveira Filho, our CEO who had the first ideas and visions during his uncountable flights Recife - São Paulo;
- Our Lead and Web Designer Dyego Carlos, who put the idea to life, his dedicated work to make this app being transformed twice!
- Our Alumni Senior Developer Nielson Santana, which developed all the code, specially the algorithm behind our quiz workflow.
- Rita Costa, our Marketing Analyst , which helped us at the second transformation of MamaRisk, turning into a novel and usable app.
- All the people who helped us with feedbacks and critics.
