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Odyssey

Integration of the know-how of best possible standard of care and tailor this information to an individualized patient.

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Odyssey solution: My Journey beyond breast cancer

  • The challenge: From our perspective, what was the main problem that we set out to solve?

A cancer diagnosis brings an immense shock to a person's life. Making decisions under psychological pressure often does not lead to the best possible outcomes. A woman diagnosed with breast cancer faces a number of decisions before, during and after her treatment that will impact her future and that of her family and friends. 

Women want to be in control of their life, and make their own decisions, using evidence-based, reliable and up-to-date information. Therefore, there is a need for  “patient decision support systems” that are able to integrate the know-how of the best possible standard of care and tailor this information to individualized patient profiles in an empathic language that patients can easily understand. 

This decision support system also needs to integrate a holistic approach beyond medicine or treatment, for example considering the cultural background and lifestyle choices. In contrast, the provided information provided to breast cancer patients is often incomplete or does not consider the impact on all relevant aspects. Each woman has her priorities in life, which impact her decisions: a young woman must be sufficiently informed on the impacts of available therapies on future pregnancies. It is key that a patient needing reconstructive surgery receives timely information on the available options and the pros and cons of each. It is also very important that active women can return to being able to do their favourite sports and activities quickly to enable the fastest possible recovery and regain quality of life.

Finally, support is often needed in decision making. Being able to integrate both professional advice and information from women who have been on the same journeys is very helpful for a sense of control and higher quality decision making.  Availability of information for individual decision making, health professional support and community support are all key to effective and efficient recovery and high quality of life.

There is, therefore, the need to empower women in facing breast cancer to regain control of their lives while providing the information, the empathy and the support required.

 

  • Patient champion interaction and other stakeholders: how did we interact to design a solution that meets the needs of the stakeholders?

The patient champions  (L.A. as well as S.R. (8) and E.T. (7) ) were fully integrated from the outset, they explained clearly the challenges and the level of uncertainty, complexity and lack of trusted information encountered by women during their initial time facing a breast cancer diagnosis. It was very helpful to have very clear challenge explanations in the video, challenge definition at DayOne webpage and follow-up discussions with the patient champions.We found that additional Data Resources, such as scientific papers and bibliography, were also very helpful to understand the patient decision support needs. Having patient champions as core team members  encouraging us to focus in the holistic vision (not only clinical) & a patient-centric approach to help breast cancer, women, in making the best decision and accompany them in a confident, empathic and professional experience.Finally, we appreciated guidance on the project priorities, directions and requirements. The solution was therefore fully co-designed with the patient champions.

Our team was reinforced by the expert support of Anna Cabannes, an international expert in the patient support and advocacy programs from the US. She has provided very valuable guidance regarding the options and considerations for the project.

The team, guided by our project manager, collected requirements,  bibliography and design potential solutions with our group of developers taking into consideration existing solutions for chronic diseases and technical and time limitations. After a few sprints of application prototypes including the feedback from the patient champions and the team, we develop our solution Odyssey. 

            

Description of the solution: What is the approach? What does it do?

Our solution called Odyssey is an evidence-based, patient-centric, empathic, patient decision support systems with breast cancer using the following features: 

  1. TRUSTED INFORMATION repository where major milestones, options and relevant questions for each stage of the patient journey are explained by professionals of reputed institutions and customized according to their interests and lifestyle.

 

  1. COMMUNITY CHAT AND FORUMS: To connect with other women in similar situations, chat and accompany them on this journey. 

Create your personal support circle/community of friends and family to share updates and receive support.

Forums to discuss between patients about the most relevant topics and questions. 

  1. CONTACT PROFESSIONALS via  (not only with healthcare telemedicine professional, also for wellness, psychologists, etc)

To include in the future: Questionnaire and Chatbot functions to interact regularly with patients and increase patient empowerment and guide them through the application. 

 

  • How does it work? Which resources does it require?

Mobile app as patient decision support systems with the features mentioned above.

Resource required: Agile PM, App UI designers, App developers, AI(chatbox), App Marketing Developer, Cancer HCPs, Cancer associations  / Patient Champions and IT Data Experts. 

  • What are the benefits? And who benefits from our solution?

The goal of our solution is to equip women with breast cancer to understand their treatment options, choose complementary actions that improve their quality of life, and regain control over their life. 

Major benefits are increased knowledge of the disease and understanding of treatment choices, and patient empowerment and confidence of women with breast cancer by connecting with 3 main sources: Trusted information, patients in the same situation & healthcare professionals, all in a patient-centric way. 

Ultimately the tool should improve patients outcomes and quality of life, being those outcomes defined by each patient.

 

  • Our Milestones, achievements and prototype

Major achievements: 

We went through all these phases Understanding, Diverge, Decide solution and Create a prototype, however we could not validate the solution  with people outside of our team yet. 

 

  • Challenges we encountered

Major challenges: 

1.-Find a comprehensive form of visualization of the patient journey for breast cancer women taking into account that every patient has her journey and this path should be a part of the clinical one.

2.-To the patient experience the path and the pathology awareness should be visible and focus on the specific phase of cancer development and recovery.

3.- Translation of ideas into the real digital solutions. Expectations and time clash. 

 

  • Resources that we used
  • TEAM members:
    • Patient Champions: Larisa Aragon, Egle Thomas
    • Project coordinator: Paola Valinotti
      • Focal point of the project, natural coordination, strategic input and presentation.  
    • Project Manager: Vilem Guryca
      • Project infrastructure, PM consolidation, link with IT Teams, presentation
    • Key contributors: Ruben Risco, Anna Cabanes
      • Key input into the prototype design, from both technical and strategy perspective, presentation
    • IT Software Developers: Daniel Krezelok, Vojtech Belovsky and Daniel Jaracz (all three: iDevBand Ltd, Czechia)
      • IT tools, software development and graphics
    • Others: Cancer Epidemiologist, Healthcare Innovators, DayOne technics, Startups Experts & R&D Project Managers. 
  • Datasources from the web, references provided mainly by Patient champions
  • IT and programming tools

! Big thank you all ! As a smaller Team we had a great chance to know each other and act on broader spectra of roles here. 

 

  • Contact/promotion channels on our social media

Our members promoted DayOne Hackathon in social media such us Linkedin 

  • Our takeaways and learnings

1.- Solutions should be simple & empathic due to the emotional conditions of patients

2.- Every patient has their own journey, therefore personalized guidance should be provided taking into account her priorities, lifestyle, and health status.

  1. - Software developers should have been involved as soon as possible - for reality check and managing timing expectations.
  2. - Though based on purely voluntary and self-forming, the key accountabilities might have been defined as soon as it is possible. 

 

  • What's next: how we would like to proceed and what we need to do so

 

  • Finalize the prototype in the Agile approach having Patient Champion involved.
  • Mobilize ecosystem stakeholders in support of this initiative (patient associations, private and public partners, professional associations).
  • Define the business model behind this platform (e.g. Premium base with Professional services listed in the application can sponsor this app.)  and calculate the cost for a validated MVP.
  • Onboard to our team the resources required:  Agile PM, App UI designers, App developers, App Marketing Developer, Cancer HCPs, Cancer associations  / Patient Champions and IT Data Experts. 
  • Create the MVP and validate it with a minimum number of patients.
  • Launch the platform in an incubator  e.g. DayOne incubator.

 

 

08.11.2020 12:00

Hackathon finished

08.11.2020 10:43

Documentation

Worked on by ruben_risco

08.11.2020 07:26

Progress made

Promoting

-- vilem_guryca

08.11.2020 07:25

Documentation

Worked on by vilem_guryca

07.11.2020 22:34

Progress made

Pitch uploaded

-- vilem_guryca

07.11.2020 22:34

Documentation

Worked on by vilem_guryca

07.11.2020 22:31

Progress made

In time!

-- vilem_guryca

07.11.2020 11:27

Documentation

Worked on by ruben_risco

07.11.2020 11:09

Team forming

larisa_aragon has joined

07.11.2020 10:52

Documentation

Worked on by ruben_risco

07.11.2020 09:05

Team forming

paola_valinotti has joined

07.11.2020 08:36

Team forming

daniel_krezelok has joined

07.11.2020 08:20

Documentation

Worked on by ruben_risco

06.11.2020 08:08

Documentation

Worked on by vilem_guryca

06.11.2020 08:01

Progress made

Mobile application

-- vilem_guryca

05.11.2020 16:38

Progress made

05.11.2020 16:38

Documentation

Worked on by vilem_guryca

05.11.2020 12:02

Team forming

Egle_Thomas has joined

04.11.2020 15:23

Progress made

Problem statement --> Backlog of ideas --> Digital Features

-- vilem_guryca

04.11.2020 15:21

Documentation

Worked on by vilem_guryca

02.11.2020 08:59

Team forming

ruben_risco has joined

02.11.2020 07:47

Team forming

amy_wilson has joined

01.11.2020 18:02

Team forming

annacabanes has joined

31.10.2020 08:03

Documentation

Worked on by vilem_guryca

31.10.2020 08:01

Progress made

A patient decision support system that is able to integrate the know-how of the best possible standard of care.

-- vilem_guryca

31.10.2020 07:59

Documentation

Worked on by vilem_guryca

31.10.2020 07:55

Team forming

vilem_guryca has joined

31.10.2020 07:55

Project started

Initialized by vilem_guryca

23.10.2020 09:00

Hackathon started

My Journey

As a breast cancer patient I want to know what to expect next on my journey so that I can prepare myself for the next step.

Challenge Details

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