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My Health Data Core

As a chronic patient, I want to be able to collect all my different records in one place

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My Health Data Core

DayOne Health Hack Basel, Switzerland on October 23 - November 8. 2020 #dayonebasel

Summary

Patients visit multiple practitioners at numerous institutions throughout their healthcare journey. For some patients, especially chronic disease patients, this involves diverse and recurring courses of treatments for multiple different indications. Throughout our lifetimes, we all accumulate thousands of health/medical data points that are typically siloed such that they are inaccessible to patients or other healthcare providers.

The My Health Data Core team aims to create a patient-friendly repository for medical/health records, including data such as doctors notes, prescriptions, treatment plans, diagnoses, lab test results, and more. The benefits include: control + empowerment for patients, time savings for patients and doctors, interoperability of health data (removing silos), a reduction in overall healthcare costs, and most importantly improved patient outcomes.

  • Our MISSION is to help patients assemble a digital copy of their own medical records for future easy access and quick retrieval.

  • Our VISION is to co-create the future of patient-centric medicine by enabling a data-driven healthcare ecosystem.

The challenge:

Doctors have to generate diagnoses and treatment plans using incomplete information (due to data silos limiting access to complete health data records) and with limited time with the patient (to access or re-collect this data). This challenge is daunting even for expert medical practitioners and specialists. This situation leads to repeated unnecessary, sometimes painful and hazardous medical investigations because of the lack of accessibility to previous health data. We aim to offer a free, efficient, secure, and scalable solution to patients willing to centralise and share their health data between Medical Institutions and Healthcare Practitioners. The application is designed to exhibit the following features:

  • Accessible to you everywhere and anytime through a mobile app and web platform.
  • Easy upload and simple classification of all types of health data into a single repository.
  • Patient friendly display of your complete medical history with simple access to any specific piece of data.
  • Allow for secure and fast data transfer to other healthcare professionals.

Patient champion interaction and other stakeholders:

Using Slack (#My-HealthData-core) project page, our multidisciplinary team of Healthcare Professionals, Scientists, Web Developers, UI/UX Developer and Project Managers interacted with Champion E.T. (7) and Champion S.R. (8) to define the problem, identify a solution, and co-create a scalable valuable proposition.

Champion E.T. (7) provided us with her patient journey experience and helped us to define the relevant features of My Health Data Core. Champion S.R. (8) helped us to set up the project on the DayOne Health Hack platform and to shape the features of My Health Data Core. Our patient champions stayed involved as core team members throughout the hackathon, being core in our co-designed solution.

Key team contributions included:

  • Peter Hummel: Peter (User Experience Design) gave our ideas a face. He designed a user interface and produced a demo that explained the functionality.

  • Jayesh Patel: As Software Developer/Consultant, I gathered the requirements from the initial meetings and gave input from the viewpoint of an experienced software developer and what could be achieved in the time period we had. Given the resources we had access to I used some personal contacts to get a basic website that performed some of the tasks identified in the meetings. I delivered a working demo of a basic functional website with a key TimeLine feature.

  • Ruben Risco: I Contributed with the 1st draft of the data core solution. Collected and transfered the requirements from the team to a basic Powerpoint sequence with the minimum features. Helped by onboarding key resources to our team as Peter Humel as UX/UI designer for prototyping. Collaborated in providing feedback to the prototype, updated project documentation and executed project activities.

  • Bhupinder Bhullar: I coordinated project activities, technical strategy development and implemented our pitch video.

  • Elaine Kanwar: I took on the role of Co-ordinator and supported collection of sample data of Patient Health Records required for the UI/UX prototype. Provided inputs for content on Github.

  • Egle Thomas: I sought out required skills and resources, including communicating with the organizing team and project sponsors to collect and share representative patient journey medical images to use in the application and website. She further helped with the documentation of the hackathon journey and the next steps and the pitch development.

  • Thomas Roos: I supported with project coordination and inputs.

  • Pascal Detampel: As a developer and trained pharmacist/pharmacologist, I contributed by trying to connect patient needs and clinical aspects with helpful technical solutions.

  • Guillaume Azarias: I set up the GitHub for the flow of information and webpage of the project, translated the medical history into data and organised the medical data. I also edited the first draft of the webpage content and contributed to the design the UI/UX prototype.

  • Simone Raisch, Patient Champion: I gave input what needs patients have and worked with Peter through the user experience

    Description of the solution:

My Health Data Core is a light app, working on mobiles and websites designed to be patient-friendly and easy to navigate during a medical appointment. It allows you, as a patient, to:

  • Display a Timeline viewer with links to individual patient data records.
  • Upload any medical/health data through the Uploader feature (app or website) as a document or using the mobile camera.
  • Define the persons allowed to access specific documents (ie. dynamic consent at a granular level).

Our Patient Champions will benefit from having access to their own complete set of health/medical records in a single place, thus allowing them to not only be more informed but also enabling them to actively participate in their healthcare journey.

Some of the benefits to Patients are:

  • Allows sharing of accurate + complete information about health history, on an as-needed basis with healthcare providers.
  • Saves time and reduces stress when you visit a specialist, change to a new doctor, a new location, or need to get a second opinion.
  • Enables patients to “own” and fully control their health/medical data.
  • Allows patients to actively participate in decision making process (ie. diagnostics, treatments, etc).
  • Reduces delays in care decisions and optimizes treatments.

Some of the benefits to other stakeholders in the Healthcare Ecosystem are:

  • Avoids re-collection of medical history, repeated laboratory tests, and thus saves time and money for practitioners.
  • Minimizes the risk of medical mistakes.
  • Allows precision-medicine so that providers can optimise the treatments for each individual patient.
  • Resolves issues that come up with medical bills, insurance claims, or any other uncertainty about past medical history.

Our Milestones, achievements and prototype

Week 1: Assembling a multidisciplinary team, understanding the Patient Champions needs, defining the goals/outcomes of the project, designing the user interface, exploration of existing tools.

Understanding the 2 main approaches :

  • Create an application to store medical data (feasible).
  • Develop an interface software to connect the most used software for healthcare professionals (not feasible).

Week 2: Continuing to get feedback from Patient Champions during our development process, accessing patient data records, UI/UX prototype design, creating the deliverables for submission at the end of the health hack.

  • Development of a prototype solution with the minimum set of agreed upon features.
  • Conducted 2 sprints with feedback from patient champions and the team.
  • Prepared documentation (GitHub) for the project, content for the hackathon submission, and a 3 minute video pitch.

Challenges we encountered

  • Due to the private nature of patient records and compliance regulations, getting sample data records of cancer patients was a challenge. GDPR and data privacy guidelines can be ensured in the next stage as there are existing solutions that we can incorporate (ie. Pryv)
  • As a newly formed team, as it is often the case, team forming and merging ideas from people of different backgrounds into concrete plans and a consensus was sometimes a challenge. We were also missing some core skills, such as front-end development. Bringing new people at the later part of the hackathon was also a bit challenging - updating and including them in the process quickly, yet keeping the process moving.
  • Deciding what is essential and what is nice to have for the prototype we created during the hackathon.
  • Differentiation of our solution from indirect competitors that already exist on the market (ie. Umana, Seqster, etc).
  • Lack of access to high-quality, structured patient data. We requested data from various sources, but in the end we were only able to access a minimal set from external partners plus data from ourselves.
  • Data size from some medical assays (ie. NGS, MRI, etc) can be a limitation for the performance of the application, as well as the backend repository for data storage.
  • The time limitation of the Health Hack meant we could not even begin to implement a proper software solution. However, we could present the ideas from the discussion with some mobile and website demo’s.
  • The nature of medical data varies massively from ailment to ailment to different medical centres and countries. Creating specific interfaces for all possible medical data is a near impossible task. So creating something simple that would integrate any piece of medical data and making it easily viewable would be a good way forward.

Resources that we used

Agile PM, App vUX designer, Developer, Entrepreneur experts, Business Developers, Doctors, Patientv Champions, and IT Data Experts.

We used the software Adobe Photoshop, Slack, Powerpoint, Google Drive.

Contact / promotion channels on our social media

We set up DayOne webpage and GitHub page. We advertised the DayOne HealthHack using social media (eg, LinkedIn and Instagram).

Our takeaways and learnings

While we focussed on the needs of our patient champions, this solution is valid for any chronic disease and any healthcare users.

We appreciated the opportunity to co-design with the patients. Many solutions are designed to be highly beneficial and functional, yet patients do not use them as they might not feel intuitive. Our patient champions challenged us to make the solution highly intuitive to people under stress, helping them to navigate easily and intuitively.

We also learned that it is possible to quickly form a highly efficient team. While there were challenges, just like in all newly formed teams, being driven by a common purpose helped us to align and find solutions to all key areas very quickly.

We further appreciated having a high diversity of skills in the team. The team members jumped in quickly to drive specific parts of the project, coordinating between themselves, making the team to be highly democratic in all decision making. It enabled highly diverse thinking and solution options, which then were integrated into the final product.

Finally, we appreciated the opportunity to work on this project together so much, that we are now looking for opportunities to continue driving it forward post-hackathon. We hope that we can get support through the DayOne accelerator, to help us launch this highly beneficial solution to the patients.

What´s next ?

  1. Finalize the prototype using the Agile approach while involving the Patient Champions. Get feedback from a broader group of patients.
  2. Refine the Business Model and Financial Model behind the My Health Data Core platform that will form the basis for developing the MVP.
  3. Onboard team members with required skill sets and secure the resources required to develop the MVP. This includes: Agile PM, App UI designers, App developers, IT data experts, database experts, and of course Patient Champions.
  4. Create the MVP and validate it with patients in the real-world. MVP development will be co-created with patients and healthcare sponsors (ie. insurance companies, industry, foundations, patient organisations).
  5. Participate in an accelerator/incubator program (ie. Day One accelerator!) to develop our MVP and secure funding for the launch of the platform in 2021.

Functionalities to consider for future development of the MVP platform: - Full development level App (TRL=8) ready for launch to the market. - Backend database (Microsoft Azure or Amazon AWS) supporting the web + mobile platforms that is fully secure and GDPR compliant. - Obtain ISO certifications, “Swiss-Made” label, other accreditations/endorsements from patient organisations to gain credibility and the trust of patients. - Scanned documents from the mobile camera (ie. print outs, fax, etc) are indexed by OCR (optical character recognition) in the database to allow for full text search. - Filtering multiple records and providing a secure link to the physician to temporarily access or download the content.

Links

Link to the challenge on the DayOne HealthHack website: My Data Core

Link to our project on the DayOne HealthHack website: My-HealthData-Core

Link to the GitHub content as a Google doc for edition: GitHub content

Link to the document on hack experience: Hack experience

Link to our Google Drive to share data: Data

Link to the document for the design of our Video: Video

Participants:

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Logo

My Health Data Core

DayOne Health Hack Basel, Switzerland on October 23 - November 8. 2020 #dayonebasel

Check our summary video here:

My Health Data Core

Summary

Patients visit multiple practitioners at numerous institutions throughout their healthcare journey. For some patients, especially chronic disease patients, this involves diverse and recurring courses of treatments for multiple different indications. Throughout our lifetimes, we all accumulate thousands of health/medical data points that are typically siloed such that they are inaccessible to patients or other healthcare providers.

The My Health Data Core team aims to create a patient-friendly repository for medical/health records, including data such as doctors notes, prescriptions, treatment plans, diagnoses, lab test results, and more. The benefits include: control + empowerment for patients, time savings for patients and doctors, interoperability of health data (removing silos), a reduction in overall healthcare costs, and most importantly improved patient outcomes.

  • Our MISSION is to help patients assemble a digital copy of their own medical records for future easy access and quick retrieval.

  • Our VISION is to co-create the future of patient-centric medicine by enabling a data-driven healthcare ecosystem.

The challenge:

Doctors have to generate diagnoses and treatment plans using incomplete information (due to data silos limiting access to complete health data records) and with limited time with the patient (to access or re-collect this data). This challenge is daunting even for expert medical practitioners and specialists. This situation leads to repeated unnecessary, sometimes painful and hazardous medical investigations because of the lack of accessibility to previous health data. We aim to offer a free, efficient, secure, and scalable solution to patients willing to centralise and share their health data between Medical Institutions and Healthcare Practitioners. The application is designed to exhibit the following features:

  • Accessible to you everywhere and anytime through a mobile app and web platform.
  • Easy upload and simple classification of all types of health data into a single repository.
  • Patient friendly display of your complete medical history with simple access to any specific piece of data.
  • Allow for secure and fast data transfer to other healthcare professionals.

Patient champion interaction and other stakeholders:

Using Slack (#My-HealthData-core) project page, our multidisciplinary team of Healthcare Professionals, Scientists, Web Developers, UI/UX Developer and Project Managers interacted with Champion E.T. (7) and Champion S.R. (8) to define the problem, identify a solution, and co-create a scalable valuable proposition.

Champion E.T. (7) provided us with her patient journey experience and helped us to define the relevant features of My Health Data Core. Champion S.R. (8) helped us to set up the project on the DayOne Health Hack platform and to shape the features of My Health Data Core. Our patient champions stayed involved as core team members throughout the hackathon, being core in our co-designed solution.

Key team contributions included:

  • Peter Hummel: Peter (User Experience Design) gave our ideas a face. He designed a user interface and produced a demo that explained the functionality.

  • Jayesh Patel: As Software Developer/Consultant, I gathered the requirements from the initial meetings and gave input from the viewpoint of an experienced software developer and what could be achieved in the time period we had. Given the resources we had access to I used some personal contacts to get a basic website that performed some of the tasks identified in the meetings. I delivered a working demo of a basic functional website with a key TimeLine feature.

  • Ruben Risco: I Contributed with the 1st draft of the data core solution. Collected and transfered the requirements from the team to a basic Powerpoint sequence with the minimum features. Helped by onboarding key resources to our team as Peter Humel as UX/UI designer for prototyping. Collaborated in providing feedback to the prototype, updated project documentation and executed project activities.

  • Bhupinder Bhullar: I coordinated project activities, technical strategy development and implemented our pitch video.

  • Elaine Kanwar: I took on the role of Co-ordinator and supported collection of sample data of Patient Health Records required for the UI/UX prototype. Provided inputs for content on Github.

  • Egle Thomas: I sought out required skills and resources, including communicating with the organizing team and project sponsors to collect and share representative patient journey medical images to use in the application and website. She further helped with the documentation of the hackathon journey and the next steps and the pitch development.

  • Thomas Roos: I supported with project coordination and inputs.

  • Pascal Detampel: As a developer and trained pharmacist/pharmacologist, I contributed by trying to connect patient needs and clinical aspects with helpful technical solutions.

  • Guillaume Azarias: I set up the GitHub for the flow of information and webpage of the project, translated the medical history into data and organised the medical data. I also edited the first draft of the webpage content and contributed to the design the UI/UX prototype.

Description of the solution:

My Health Data Core is a light app, working on mobiles and websites designed to be patient-friendly and easy to navigate during a medical appointment. It allows you, as a patient, to:

  • Display a Timeline viewer with links to individual patient data records.
  • Upload any medical/health data through the Uploader feature (app or website) as a document or using the mobile camera.
  • Define the persons allowed to access specific documents (ie. dynamic consent at a granular level).

Our Patient Champions will benefit from having access to their own complete set of health/medical records in a single place, thus allowing them to not only be more informed but also enabling them to actively participate in their healthcare journey.

Some of the benefits to Patients are:

  • Allows sharing of accurate + complete information about health history, on an as-needed basis with healthcare providers.
  • Saves time and reduces stress when you visit a specialist, change to a new doctor, a new location, or need to get a second opinion.
  • Enables patients to “own” and fully control their health/medical data.
  • Allows patients to actively participate in decision making process (ie. diagnostics, treatments, etc).
  • Reduces delays in care decisions and optimizes treatments.

Some of the benefits to other stakeholders in the Healthcare Ecosystem are:

  • Avoids re-collection of medical history, repeated laboratory tests, and thus saves time and money for practitioners.
  • Minimizes the risk of medical mistakes.
  • Allows precision-medicine so that providers can optimise the treatments for each individual patient.
  • Resolves issues that come up with medical bills, insurance claims, or any other uncertainty about past medical history.

Our Milestones, achievements and prototype

Week 1: Assembling a multidisciplinary team, understanding the Patient Champions needs, defining the goals/outcomes of the project, designing the user interface, exploration of existing tools.

Understanding the 2 main approaches :

  • Create an application to store medical data (feasible).
  • Develop an interface software to connect the most used software for healthcare professionals (not feasible).

Week 2: Continuing to get feedback from Patient Champions during our development process, accessing patient data records, UI/UX prototype design, creating the deliverables for submission at the end of the health hack.

  • Development of a prototype solution with the minimum set of agreed upon features.
  • Conducted 2 sprints with feedback from patient champions and the team.
  • Prepared documentation (GitHub) for the project, content for the hackathon submission, and a 3 minute video pitch.

Challenges we encountered

  • Due to the private nature of patient records and compliance regulations, getting sample data records of cancer patients was a challenge. GDPR and data privacy guidelines can be ensured in the next stage as there are existing solutions that we can incorporate (ie. Pryv).
  • As a newly formed team, as it is often the case, team forming and merging ideas from people of different backgrounds into concrete plans and a consensus was sometimes a challenge. We were also missing some core skills, such as front-end development. Bringing new people at the later part of the hackathon was also a bit challenging - updating and including them in the process quickly, yet keeping the process moving.
  • Deciding what is essential and what is nice to have for the prototype we created during the hackathon.
  • Differentiation of our solution from indirect competitors that already exist on the market (ie. Umana, Seqster, etc).
  • Lack of access to high-quality, structured patient data. We requested data from various sources, but in the end we were only able to access a minimal set from external partners plus data from ourselves.
  • Data size from some medical assays (ie. NGS, MRI, etc) can be a limitation for the performance of the application, as well as the backend repository for data storage.
  • The time limitation of the Health Hack meant we could not even begin to implement a proper software solution. However, we could present the ideas from the discussion with some mobile and website demo’s.
  • The nature of medical data varies massively from ailment to ailment to different medical centres and countries. Creating specific interfaces for all possible medical data is a near impossible task. So creating something simple that would integrate any piece of medical data and making it easily viewable would be a good way forward.

Resources that we used

Agile PM, App vUX designer, Developer, Entrepreneur experts, Business Developers, Doctors, Patientv Champions, and IT Data Experts.

We used the software Adobe Photoshop, Slack, Powerpoint, Google Drive.

Contact / promotion channels on our social media

We set up DayOne webpage and GitHub page. We advertised the DayOne HealthHack using social media (eg, LinkedIn and Instagram).

Our takeaways and learnings

While we focussed on the needs of our patient champions, this solution is valid for any chronic disease and any healthcare users.

We appreciated the opportunity to co-design with the patients. Many solutions are designed to be highly beneficial and functional, yet patients do not use them as they might not feel intuitive. Our patient champions challenged us to make the solution highly intuitive to people under stress, helping them to navigate easily and intuitively.

We also learned that it is possible to quickly form a highly efficient team. While there were challenges, just like in all newly formed teams, being driven by a common purpose helped us to align and find solutions to all key areas very quickly.

We further appreciated having a high diversity of skills in the team. The team members jumped in quickly to drive specific parts of the project, coordinating between themselves, making the team to be highly democratic in all decision making. It enabled highly diverse thinking and solution options, which then were integrated into the final product.

Finally, we appreciated the opportunity to work on this project together so much, that we are now looking for opportunities to continue driving it forward post-hackathon. We hope that we can get support through the DayOne accelerator, to help us launch this highly beneficial solution to the patients.

What´s next ?

  1. Finalize the prototype using the Agile approach while involving the Patient Champions. Get feedback from a broader group of patients.
  2. Refine the Business Model and Financial Model behind the My Health Data Core platform that will form the basis for developing the MVP.
  3. Onboard team members with required skill sets and secure the resources required to develop the MVP. This includes: Agile PM, App UI designers, App developers, IT data experts, database experts, and of course Patient Champions.
  4. Create the MVP and validate it with patients in the real-world. MVP development will be co-created with patients and healthcare sponsors (ie. insurance companies, industry, foundations, patient organisations).
  5. Participate in an accelerator/incubator program (ie. Day One accelerator!) to develop our MVP and secure funding for the launch of the platform in 2021.

Functionalities to consider for future development of the MVP platform: - Full development level App (TRL=8) ready for launch to the market. - Backend database (Microsoft Azure or Amazon AWS) supporting the web + mobile platforms that is fully secure and GDPR compliant. - Obtain ISO certifications, “Swiss-Made” label, other accreditations/endorsements from patient organisations to gain credibility and the trust of patients. - Scanned documents from the mobile camera (ie. print outs, fax, etc) are indexed by OCR (optical character recognition) in the database to allow for full text search. - Filtering multiple records and providing a secure link to the physician to temporarily access or download the content.

Links

Link to the challenge on the DayOne HealthHack website: My Data Core

Link to our project on the DayOne HealthHack website: My-HealthData-Core

Link to the GitHub content as a Google doc for edition: GitHub content

Link to the document on hack experience: Hack experience

Link to our Google Drive to share data: Data

Link to the document for the design of our Video: Video

Participants:

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My Data Core

As a chronic patient, I want to be able to collect all my different records in one place so that I can pull them out immediately if needed.

Challenge Details

All attendees, sponsors, partners, volunteers and staff at our hackathon are required to agree with the Hack Code of Conduct. Organisers will enforce this code throughout the event. We expect cooperation from all participants to ensure a safe environment for everybody. For more details on how the event is run, see the Health Hack FAQ.

Creative Commons LicenceThe contents of this website, unless otherwise stated, are licensed under a Creative Commons Attribution 4.0 International License.