Feedback Call Screen4Care App

AI Quick Summary

Rare Diseases are often undiagnosed or misdiagnosed for years, causing additional suffering and stress for patients and families. Late diagnoses can not only delay but also complicate the pathway to treatment. Some patients or parents of children with unusual symptoms find it difficult to describe their symptoms in words or to keep track of patterns in symptom development over time. Some struggle with literacy, verbal communication or comprehension, and others find it intimidating to speak to medical professionals or do not have easy or affordable access to General Practitioners.When anyone uses the internet to consult with 'Dr Google' by typing in symptoms and phrases searching for hints or help, they open the way to misdiagnosis and confusion, which makes the situation worse and creates even more anxiety.When symptom groups gathered from the internet seem to correspond to a rare disease, it is not easy to find a way to share that knowledge with General Practitioners or medical professionals with confidence: we can all imagine a General Practitioner's polite but resistant reaction to a patient offering information gleaned from unmoderated, non-medically validated data gathered from the web.Our Goal We want to create with your help a digital solution to enable all patients or parents of children/family members with symptoms to input their information in an app using a touchscreen interface, which can then produce a script to help demonstrate to a General Practitioner or other health care professionals that there may be a pattern and a pathway to diagnosis to explore.We envision making this app available through the Screen4care Project.Check out the demo of the prototype App video Call for Feedback and Co-CreationWe anticipate achieving a better outcome if we can integrate your ideas and suggestions into the development process. We are keen to know how much and what kind of data a patient, or parent/guardian of a patient, might be willing to share in such an app, for what purpose, and what other features might be helpful and interesting.Consider yourself a potential patient or a patient advocate and think about 4 types of themes that are of particular interest to you. 1) Personal data. Personal data is helpful once the user sends/forwards the collected data to his/her General Practitioner. Would you feel comfortable entering in such data (name, age, country of origin, gender) in the app or can you think of another option to identify your input once forwarded to a health care professional?2) Ethnicity. Information about ethnicity is also important, as it can align with some specific medical conditions or the occurrence of rare disease. Would you feel comfortable sharing this type of information in the app or what conditions would need to be fulfilled prior to your input? 3) Medically validated information. It is planned for the app to check the symptoms against medically validated information and not against generic information from the unmoderated web. Would you find this a reassuring feature or do you think the reference against which the symptoms are checked does not really matter, as long as they point the user in the right direction? 4) Age range avatars. Many rare diseases are detectable from birth either by screening or through observing symptoms during growth. When using the app for detection of symptoms in an infant or child you care for, it might be convenient to have different age range avatars (including a baby avatar) available. Do you think this would be a helpful feature for the collection of data or just a "nice to have"? Can you think of other features that we should consider?Please share your ideas with us and submit them right away by clicking on the button at the top right (after a quick registration)!All input will be reviewed carefully by the development team. We intend to implement those ideas and suggestions that are best suited to improve the adoptability of the app.Thank you very much for your willingness to contribute your time, expertise and common sense in helping to make this app better and impact the lives of potential patients and their families in shortening their path to rare disease diagnosis! Attached, you will also find further information about the joint controllership.

Challenge Metadata

Challenge Name: Feedback Call Screen4Care App
Date: 10/30/2024 1:32:50 PM
Administrators:
- Sem Mattli |
- Adrian Bachofen |
- nadine c martin

Challenge Description

Some patients or parents of children with unusual symptoms find it difficult to describe their symptoms in words or to keep track of patterns in symptom development over time. Some struggle with literacy, verbal communication or comprehension, and others find it intimidating to speak to medical professionals or do not have easy or affordable access to General Practitioners.
When anyone uses the internet to consult with 'Dr Google' by typing in symptoms and phrases searching for hints or help, they open the way to misdiagnosis and confusion, which makes the situation worse and creates even more anxiety.
When symptom groups gathered from the internet seem to correspond to a rare disease, it is not easy to find a way to share that knowledge with General Practitioners or medical professionals with confidence: we can all imagine a General Practitioner's polite but resistant reaction to a patient offering information gleaned from unmoderated, non-medically validated data gathered from the web.

Our Goal

We want to create with your help a digital solution to enable all patients or parents of children/family members with symptoms to input their information in an app using a touchscreen interface, which can then produce a script to help demonstrate to a General Practitioner or other health care professionals that there may be a pattern and a pathway to diagnosis to explore.
We envision making this app available through the Screen4care Project.

Check out the demo of the prototype App video

Call for Feedback and Co-Creation

We anticipate achieving a better outcome if we can integrate your ideas and suggestions into the development process. We are keen to know how much and what kind of data a patient, or parent/guardian of a patient, might be willing to share in such an app, for what purpose, and what other features might be helpful and interesting.

Consider yourself a potential patient or a patient advocate and think about 4 types of themes that are of particular interest to you.

1) Personal data. Personal data is helpful once the user sends/forwards the collected data to his/her General Practitioner. Would you feel comfortable entering in such data (name, age, country of origin, gender) in the app or can you think of another option to identify your input once forwarded to a health care professional?

2) Ethnicity. Information about ethnicity is also important, as it can align with some specific medical conditions or the occurrence of rare disease. Would you feel comfortable sharing this type of information in the app or what conditions would need to be fulfilled prior to your input?

3) Medically validated information. It is planned for the app to check the symptoms against medically validated information and not against generic information from the unmoderated web. Would you find this a reassuring feature or do you think the reference against which the symptoms are checked does not really matter, as long as they point the user in the right direction?

4) Age range avatars. Many rare diseases are detectable from birth either by screening or through observing symptoms during growth. When using the app for detection of symptoms in an infant or child you care for, it might be convenient to have different age range avatars (including a baby avatar) available. Do you think this would be a helpful feature for the collection of data or just a "nice to have"? Can you think of other features that we should consider?

Please share your ideas with us and submit them right away by clicking on the button at the top right (after a quick registration)!

All input will be reviewed carefully by the development team. We intend to implement those ideas and suggestions that are best suited to improve the adoptability of the app.

Thank you very much for your willingness to contribute your time, expertise and common sense in helping to make this app better and impact the lives of potential patients and their families in shortening their path to rare disease diagnosis!

Attached, you will also find further information about the joint controllership.