Project Brief: How might we help patients to experience genetic testing journey better?
Reframed Task: How might we deliver practical and emotional support to patients and family members that is tailored to individuals at different stages?
1. Introduce to experienced hereditary cancer patients with similar stories.
2. Emotional support to relieve anxiety in genetic journey.
3. Match according to stage-based needs for specific information.
1. Cancer Research UK predicted that more than 1 in 2 people would develop cancer at some point in their lives.
- Cancer Research UK
2. National Cancer Institute explains that 'Inherited genetic mutations play a major role in about 5 to 10 percent of all cancers. Researchers have associated mutations in specific genes with more than 50 hereditary cancer syndromes, which are disorders that may predispose individuals to developing certain cancers.' This means that specific hereditary genes are passed from one blood relative to another.
3. For example, breast cancer is a common cancer and 1 in 7 women develop it during their lifetime in the UK. Researchers think that around 5 to 10 out of 100 breast cancers (5 to 10%) are caused by an inherited faulty gene. The genes that significantly increase the risk of breast cancer and can be tested for are BRCA1, BRCA2, TP53, PALB2 and PTEN.
- Cancer Research UK
4. Genomic tests help estimate your chance of developing cancer in your lifetime. In hereditary cases, a germline genetic test can identify predispositions that can lead to increased cancer risk. Knowing this risk can support patients access screening and prevention options. Furthermore, in hereditary and non hereditary cancer, having information on tumour DNA, can help indicate which treatments will be the most effective.
From the research, our team narrow down the scope and made a How Might We statement to dive in more. 'How might we assist family members to process the patient’s results (positive hereditary cancer) and inform their next necessary steps?'
We conducted a survey, a patient shadowing, and 12 interview with GPs, genetic counsellors, oncologists and charities, who gave us the medical knowledge around inherited cancers and genetic testing. On the contrary, interviewing with patients and their family members gave us real insights about their needs and painpoints during the genetic testing journey.
Insights that we found are:
1. When patients are diagnosed with cancer, the condition affects their whole family. For Hereditary cancer this affect is even more. A Possible risk of gene mutation affects the family and their children for generations.
2. The genetic test that reveals a mutation is a life altering moment for the patient and continues to the family, who are now surrounded by uncertainty, anxiety, questions and lots of decisions to be taken in years to come.
This is a key moment in the journey and that’s why we focus to help inform the next necessary steps for patients and family members.
Phase 1: Understanding User Journey
For the workshop phase 1, we had 5 participants who were diagnosed as BRCA1 positive and 2 participants of patients' family members. We guided through the workshop by using Miro - the online collaborative whiteboarding platform and Zoom. From this workshop, our aim was to fully understand the genetic testing journey of hereditary cancer patients and their family memebers. As well as spotting their pain-points and needs.
The key insights from these sessions that our team wanted to focus were:
1. Different people have different journey which is always long and complex, so information should be tailored to each person.
2. People need different information at different stage of the journey, so they want to talk with people who had experienced similar journey.
3. People are looking not only medical support but also everyday practical information and emotional support to live with the diagnosis or a possible risk of a mutation.
After doing individual sessions, our team clustered the insights and voted the interest area to find and build the design solutions for our stakeholders.
Co-creation Workshop 1
Phase 2: Testing Service Concepts
'Getting a first genetic test result letter from NHS'
From the interview and workshop phase 1, we have found some of the genetic tested patients had a hard time finding out themselves that they have positive test results via a letter from NHS. They mentioned that the letter was less informative and less humane. So we wanted to check this key moment again with the newly updated inform letter that we have gotten from London North West Healthcare through our partner.
Through the workshop, the given later was medicaly clear but it was not fully related to the participants own problems.
'Getting a genetic testing guide kit from NHS'
From the previous research, some participants made a point that it is confusing and uninformed at the beginning of the genetic testing journey. They may get some materials such as leaflets from NHS but no further guidelines for individuals. So we suggested a kit that includes information leaflets, letters to inform family members about genetic testing, a calendar diary, a notebook for questions, and an object that has a contact number that you can seek help with.
From this workshop, we understood the participants want information that is more related to their daily life events. They said it will be useful to check out personal stories inside the given kits which suggest them guidance and assist decision making. Furthermore, they do not wanted all information at once, but want to get it in steps and stages.
'Help from the buddy'
We realize the help from others such as family members, charities, forums, and support groups are playing an essential role for patients during and beyond their genetic testing journey. So we wanted to test the idea of a buddy that can help the participant throughout the genetic testing journey. Participants were allowed to choose one buddy persona for each stage that our team made or create their ideal type of persona for the specific moment.
We gained a lot of useful insights from this concept as participants showed great interest in this idea. The insights we have found are:
1. participants wanted to talk with different people at a different stage when they needed different information
2. they want to know other people's life experience and their decisions
3. want to talk with others about things that they are sorry to ask for their doctors such as daily and practical kinds of stuff
Co-creation Workshop 2 & Validation
Phase 3: Prototyping Service Design Concept with Wireframes
For the co-design phase 3, we had 5 participants who were diagnosed as BRCA1 positive, 2 patients' family members, and 2 genetic counselors. We guided through the workshop by using Miro, Zoom, and Figma. From this co-design session, we aimed to prototype our design concept and wireframes.
The session has 5 parts. Part 1 is to recap our previous research that helps the participants to refresh our project by introducing key points and problem statement. Part 2 is testing the matching service. We introduced persona's (Rose who is in the mid-50s, expecting genetic test result) current scenario which has lacking touchpoints of support during the genetic testing journey. And then a new journey of persona (Matching with experienced hereditary cancer patients who have similary story)based on our service proposition.
Between Part 2 and 3, we explained the low-fidelity wireframe. A wireframe has a landing page that describes NHS Genomics Supports, who are the service partners, and some stories about the users who are using our service. Then, click the Add button to find the supports that they need by selecting parameters for persona Rose. Some parameters help to find a good match for Rose such as age, gender, genetic problem, and genetic testing stage. After finishing adding parameters, the service suggests individuals or groups that the users can participate in and get support. From Part 3, we specifically asked about the parameters such as what kind of parameters do they need and how specific should they be to match with others who have a similar experience. This was the most important part of our testing since these details affect the service's tone of voice as well as a permissible range of personal data. Part 4, we asked about participants about their preference to connecting with groups or individuals. And how to share data differently between the two. Lastly, we wanted to know if they are willing to join the service to share their story as a experienced patients.
Feedbacks and Insights
The session helped us validate our ideas and even work on the loopholes.
First, we found that it’s important to give users the option to choose to match with groups or individuals, as this choice hugely depends on the topic and user.
Second, we should create a conduct and confidentiality agreement in our service to reduce the risk of sharing unvalidated medical information.
Third, users do not need financial incentives to join back as a volunteer. They want to give back to the community for the purpose of volunteering.
Last, we found that if they gets benefits from our service, they are willing to share data such as age, sex, gene type, cancer history, and their personal information. But we need to give users an option that they don’t need to share all of their personal data.
With all these learnings, we designed NHS Genemate.