MyOwnData - I own my data, my data is my own

Yes yes, every team goes through these times. And you are doing a good job, we must be keep motivated :lotus: :white_flower: :flower_playing_cards:

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Thanks for replying, you did mention that your vision is to be the platform for clinical trials and you’re going to test the product with the CCMO on research involving Human Subjects, there’s really something about this response that doesn’t sit right with me, how would you handle (Human) casualties?
Thank you!

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I think you don’t understand the answer, which is understanable because medical is complicated with many stakeholders. Let me explain it more (also check the presentation, because their we explain everything)

At first you have to know that creating inclusive clinical trials is the most important part for having good results. For example, over 44.000 COVID-19 trials registered in clinictral.gov between 2020 and 2021 reported 21.2% sex/gender as a recruitment criterion and 4% reported intention to consider sex/gender upon analysis.

The overarching challenge (Innovative Health Initiative - European Union)
A lack of representativeness in trials to reflect the patients that use the medical products
➢ Patient recruitment and retention remains a leading challenge in the efficient completion of clinical
studies, including studies on medicinal products, medical devices, or IVDs.
➢ There is still only limited diversity within recruited patient populations.
➢ The under-representation of diverse populations (due for instance to their race and ethnicity,
gender, age, socio-economic status, geographical location) creates knowledge gaps about the risks
and benefits of health technologies for these specific populations.
➢ This topic aims to develop a multi-faceted approach to overcome the multifactorial barriers
associated with the recruitment and retention of underserved patient populations in clinical
studies and to contribute to transforming the way clinical studies are conducted in Europe.

In the Netherlands there is a study going on why men are more joining trials for cardiovascular disease than women. If clinical trials are not representive the people, it can create bias. In the USA some drugs have been withdrawn from the market as it has insufficient results regarding inlusivity.

Conclusion is that it’s important that everyone can join clinical trials, own their data and can use this data for themselves and sharing for research. That’s why we created MyOwnData.

About the CCMO (in dutch: Centrale Commissie Mensgebonden Onderzoek (CCMO), in english: Central Committee on Research Involving Human Subjects (CCMO)) See their website: https://english.ccmo.nl/ The CCMO consists of members and deputy members representing the various disciplines as stipulated in the WMO. The secretariat of the CCMO supports the committee in its legal tasks and is managed by the executive director. The secretariat consists of three teams: the CCMO Office, the National Clinical Trial Office and the Team Operational Management. The National Clinical Trial Office supports the committee and 11 accredited medical research ethics committees (MRECs) in reviewing research with a medicinal product, the CCMO Office supports the committee in its other legal tasks.

We are working with the CCMO, because they want to make clinical trials more inclusive. For them it’s important to work on innovative idea’s that can make this goal happen. CCMO is not doing clinical trials but they are supervisor for clinical trials in the Netherlands. For them it’s important that organizations in the Netherlands are doing clinical trials following the requirments.

Together with the sickle cell patient organization OSCAR Nederland, we are going to test MyOwnData to make it for sickle cell patients more easy to participate in trial, own their data and control their data.

I hope this explain your answer.

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I must commend how you give detailed elaborate responses tailored towards better understanding, everything seems clear to me now, thanks!

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Hello there, I like how clear is your project description scheme and thank you for that? I was kinda wondering what kind of features differ your project from AI category to Builder? @Steve20

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Really liked the detailed presentation which makes clear understanding about flow, connection, use case and everything possible.
Alll the best for s5

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Thank you @manfred_jr :blush:

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Thank you that everything is clear😊 The product can be in multiple categories. We are using also AI in the product, so it fits in the AI category. However we won earlier the TRON hackathon, whereby we won the first prize in the Ecosystem category. This means that we have to submit in the builder category

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Thank you @amazing.vive :blush: So nice reaction!

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i own my data , my data is my own , my own is my data .lol whats left? just kidding haha😂

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Healthcare is very serious and important topic, it’s good to mention this in the slogan :ok_hand:

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Hi @Steve20

Thank you for joining us back in the TRON Hackathon for what appears to be your third season!

A few questions about your experience from the last 3 versions.

  • Were there any major tech challenges faced in going from conceptual design to a functioning platform?
  • What was the testing/QA process like before launching the MVP with users and what is implemented now for the future?
  • Do you have any user metrics to demonstrate adoption and growth between versions?

Also, if you could share a high-level summary of what’s new for this iteration.

Looking forward to hearing from you!

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Hi @Steve20,

very interesting concept,

We try a bit the app:

First the

Seems to be down:

  1. We created an account on the survey creation. And we saw 3 project trials from your video are in our account, It should be surveys for each Survey Creator or all the survey should be public?

  2. How do you prevent that a user will create a lot of accounts in order to fill out a lot of surveys only for the prize, so how the data is actually bind with a real subject /a human being

Thanks,
onchaindev :white_heart:

Thank you for the reaction @EMerchant. It’s nice to work with TRON and create value for an important topic. Sorry for the later reply. We are preparing our product for the world orphan drug congress 2023 where we will present MyOwnData.

Regarding the questions:
Yes in this version we integrated the process of creating the Informed Consent with the TRON wallet and to sign the contract as participant. From our stakeholders and test users we got the remark that this is a big value if this can be done insight the application. Everything is integrated with the TRON wallet, which gives the trustability a high lever. For example, changing data will be more difficult so this can protect that someone will use the data without approval. This was a difficult process to build.

Other parts

  • We created a new technical infrastructure that is compliant with the GDPR rules. See the presentation.
  • Possibility to cashout the credits into your tron wallet, see demo.
  • Integration of google Wear OS. This makes it possible to connect with the wearables from the google ecosystem, see demo.

Before launching the website and app on production first we test in localhost. When everything is done then we make live.

The adoption is growing quickly. We have build very important and high level features. Also we are working with the sickle cell foundation, patient organisation OSCAR and CCMO. This shows that organisations see the value of the product.

Please see the presentation and video for more details.:blush:

If you have more questions, please let us know

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Thank you for the reaction @constantinpricope201

Sorry for the later reply. We are preparing our product for the world orphan drug congress 2023 where we will present MyOwnData.

Please use this link https://myowndata-app-tron-s5.netlify.app/

  1. Regarding the information in the app. This is testing data. In the real case you can only see the surveys from a studie when you have signed the informed consent. This is also one of the new features that we have build.

  2. It’s not possible to create multiple accounts. We have a connection with the medical record system in the USA and the Netherlands. We are doing this with FHIR. You have only one medical record, so you cannot join with multiple accounts in the USA and the Netherlands. Regarding to get points by joining studies. You can only get the rewards when the study is finish. In the next part we want to use an AI algoritme that can check the way how people using the application.

If you have any question, please let us know😊

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We are going to present MyOwnData at one of the biggest healthcare congress!

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Glad to see your project again, this time in season 5. Good luck!

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@marlin007 thank you for the nice message :blush: Thank you for the vote

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I’ve been watching this closely and quite frankly, I’m very impressed by what you’ve going on, your track records from previous seasons supersedes itself, keep building!

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Thank you @manfred_jr, I have the feeling that now the project is making big steps.

If you want to support us in the competition, will be great :blush:

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