Seeking Feedback: US TopX HHS AI & Tech Sprint (Cost of Illness Model & Burden Index)

[Healthful_Manny]

Hi Everyone,

My name is Manny Duenas, and I am reaching out with permission from the S4ME admin team. I represent a small team of MIT-trained applied data scientists, AI/ML software engineers, and health economists, two of whom have been impacted by LC and other invisible illnesses. We are entered into this year's US TopX HHS AI and Tech Sprint for Invisible Illness. We are in the Cost of Illness Challenge Area wherein teams are asked to quantify the full impact of invisible illnesses to make costs visible, measurable, and impossible to ignore.

Our approach relies on two complementary platforms, and we would deeply value the community's expert feedback:

• National ROI Model: A transparent, extensible national model built by ingesting nearly 6,500 data sources to help policymakers understand the true economic cost of Long COVID, ME/CFS, and Lyme Disease. While the model is currently embargoed for the competition submission, we hope to share it during 1:1 feedback sessions. If you are willing to review it with us, you can book a 20-minute time with our team here: https://bit.ly/4vnfAs2.
• Community-Led COVID Burden Index (CLCBI): A draft assessment designed for anyone who has had COVID (diagnosed or not) to capture lost work, pay cuts, unpaid family care, out-of-pocket symptom management costs, and health-related quality of life decrements in one sitting.

How You Can Help:

We are not yet fielding the CLCBI live. Instead, we are looking for critical feedback to refine it before broader distribution:

• What is missing?
• What would you cut?
• Which questions are too hard or burdensome to answer?

All feedback may be sent directly to manny.duenas@alum.mit.edu. We will share the final version once all feedback are incorporated.

Timeline Note: We have only 6 days until our submission is locked and just under 2 weeks until our final presentation to the TopX HHS judging panel. We deeply appreciate your support and insights. Our goal is to ensure that decision-makers have the data they need to act with urgency and ambition equal to the impact these illnesses continue to have on global prosperity.

As someone who has lived much of his life at 30%, I know personally that every gift of time and energy comes at a high cost, and I deeply appreciate your support, but certainly not more than you feel able to provide.

With Sincere Gratitude,

Manny & Team Healthful

 

[Peter T]

Welcome @Healthful_Manny

I have had ME/CFS (following EBV infection) for over 30 years now, so presumably am not your target demographic. One thing I was thinking is that a cross sectional evaluation though obviously important ultimately will not tell us the long term costs of Covid-19. My experience was of going half time at work and gradually improving over a number of years to the point I I was thinking of returning to full time work. Unfortunately five years in, an episode of seasonal flue triggered a major relapse and I had to stop work completely. I was managing self care and daily living activities, but since a subsequent relapse nearly twenty years in I now need carers to be able to continue living independently.

I wonder if given the over lap with ME/CFS, those with non Covid triggers might offer some hints at possible long term implications of Long Covid, given that though for some improvement and even full recovery is a possibility, relapse and further deterioration even decades down the line is also possible.

 

[Utsikt]

Hi Manny!

I’m going through the survey and will write my thoughts here along the way. I’m not based in the US, so I’m assuming I’m not the target audience for the final version.

First: Please consider removing the GIF. Visually intrusive elements and ME/CFS go very poorly together. You can post the pages as separate images.

The survey is very long. The start should indicate how long and if you can take breaks in between. The more severely affected will not be able to complete it.

It asks for lots of sensitive data and it does not provide enough information about how the data will be handled and what it will be used for. You’d have major issues with GDPR if you were in the EU, and I would not be surprised if data like this would require ethical approval for a research project in the US.

Many people with LC struggle with brainfog and have limited cognitive capacity. Using double negatives in the questions is a bad design choice.


How am I supposed to remember what I ticked off in the previous question? Also, it should be a resizable box, not just a line.

Another poor design choice. Why not just use multiple choice questions with checkboxes for each option?

This is where my session stopped. I was told it had expired and I was told to log in, but I don’t have an account.

I think you intentions are good. As an economist myself I believe that demonstrating the true cost of covid will make it harder to ignore, so it’s a worthwhile effort if done right.

 

[Healthful_Manny]

Welcome @Healthful_Manny

I have had ME/CFS (following EBV infection) for over 30 years now, so presumably am not your target demographic. One thing I was thinking is that a cross sectional evaluation though obviously important ultimately will not tell us the long term costs of Covid-19. My experience was of going half time at work and gradually improving over a number of years to the point I I was thinking of returning to full time work. Unfortunately five years in, an episode of seasonal flue triggered a major relapse and I had to stop work completely. I was managing self care and daily living activities, but since a subsequent relapse nearly twenty years in I now need carers to be able to continue living independently.

I wonder if given the over lap with ME/CFS, those with non Covid triggers might offer some hints at possible long term implications of Long Covid, given that though for some improvement and even full recovery is a possibility, relapse and further deterioration even decades down the line is also possible.

Hi! Thank you! Your point is very well taken. That is, after the Sprint, we will design for longitudinal follow-up, as risks, impacts, and costs will certainly only accrue over time, particularly as the sequelae of Long COVID have not had time to fully bear out.

I love your thought on ME/CFS as a proxy for long term implications of Long COVID. Our cost of illness model can toggle between Long COVID, ME/CFS, and Lyme Disease, therefore we treat each of these as independent, and therefore would prefer to categorize ME/CFS on its own, and have a separate analyst-adjustment for whether they would like to apply long term ME/CFS sequelae as a proxy for long-term Long COVID.

 

[Healthful_Manny]

Hi Manny!

I’m going through the survey and will write my thoughts here along the way. I’m not based in the US, so I’m assuming I’m not the target audience for the final version.

First: Please consider removing the GIF. Visually intrusive elements and ME/CFS go very poorly together. You can post the pages as separate images.

The survey is very long. The start should indicate how long and if you can take breaks in between. The more severely affected will not be able to complete it.

It asks for lots of sensitive data and it does not provide enough information about how the data will be handled and what it will be used for. You’d have major issues with GDPR if you were in the EU, and I would not be surprised if data like this would require ethical approval for a research project in the US.

Many people with LC struggle with brainfog and have limited cognitive capacity. Using double negatives in the questions is a bad design choice.

View attachment 34607
How am I supposed to remember what I ticked off in the previous question? Also, it should be a resizable box, not just a line.
View attachment 34608
Another poor design choice. Why not just use multiple choice questions with checkboxes for each option?

This is where my session stopped. I was told it had expired and I was told to log in, but I don’t have an account.

I think you intentions are good. As an economist myself I believe that demonstrating the true cost of covid will make it harder to ignore, so it’s a worthwhile effort if done right.

Hi Utsikt! Thank you so much for going through our draft. We will absolutely incorporate every suggestion. This is why we ask for individuals to review before attempting to broadcast it more widely so we can make these types of fixes.

Indeed, if individuals are logged in, then they are able to resume from where they left off. Let me work on the back-end to extend the time-out to allow for more time to complete the assessment. One possible solution could be to simply break the assessment into two smaller assessments. Our team will think through the implications.

We would love your feedback as an economist - we have two health economists on our team, but can certainly benefit from your perspective!