Page banner

Data4SCD

Challenges

Welcome to the Challenges section for the Healthathon! There are three areas where Healthathon participants worked to develop solutions. Click 'Join In' on any of the first three tiles now to review background, recommended reading, and get inspired.

Filter Categories
Healthathon Challenges

“ Transition age is when you start to encounter the discrimination a lot more, because you're not a cute little kid anymore that everybody has empathy for. You’re an adult, you’re grown and so they change, you receive different treatment. ” -Patient " When I turned 26 last October, I was under the impression that I would be kicked off my parent’s insurance at the end of 2019, but I got kicked off their insurance at the end of October and I was scrambling to try to fix that because my insurance didn't kick in until January 1, 2020, [...] I had a doctor's appointment that needed to be covered .” -Patient “ I think [my pediatrician] did really well with me as a patient in that time period, but I didn't get transitional information. I didn't get that hand off. [...] [On transitioning to an adult healthcare provider] It just seemed like there wasn’t education on sickle cell, it didn’t seem like she knew how to approach or make a plan for me, or whatever it was. I didn't trust them being able to handle my care. [...] I think, even when I went to see my hematologist there was never a specific, this is your plan of action, this is what you need to do for you. It was just very generalized, this is what normally affects sickle cell patients, so this is the path we’re putting you on .” -Patient Caregivers of children with SCD bear the burden of all care coordination, decisions, life interruptions, and more. Coordinating primary care, making healthcare and treatment decisions, paying for care, managing work and school absences when a child needs to go to the ER or be hospitalized are some of the caregiver's responsibilities. Healthcare for children with SCD is generally more welcoming, empathetic and knowledgeable than adult care. When patients with SCD approach adulthood and need to rely less on their caregivers, they face many new and unfamiliar barriers: Securing multiple providers they might not fully understand, learning about health insurance options, making all their healthcare decisions, negotiating sick leave at work and school, being met with bias and discrimination in healthcare. This happens right around the time when they want to be most independent and to blend in with their peers, which also happens to be the time when SCD complications can become increasingly serious. Challenges How might we facilitate the information flow between pediatric care and adult care? How might we educate SCD young adult patients on health insurance options before they need to make decisions? How might we educate and empower SCD patients to handle their condition and treatment before reaching transition to adult care? How might we help caregivers assist in helping SCD patients gain more independence? How might we assist SCD patients in finding and understanding their healthcare options? How might we empower young adult SCD patients to get their unique needs met at work and school? How might we ensure young adult SCD patients' rights are met at work, at school, and in healthcare? Learn More: Inspiration: Areas of Opportunity  > Recommended Reading > Data Sets  >

6
6
1
6
Join In
Healthathon Challenges

  “ I hate going to the emergency room. They don’t even have a protocol for sickle cell, so you’re waiting along with everyone else and your pain is increasing and then it makes it even worse because you’re not getting the treatment that you need to be getting. On top of that, [...] because you're so educated on your own sickle cell and how it affects you and what works for you, they label your ass a drug addict and then you have to go through the whole process of trying to explain to them that I'm not a drug addict. This is what it is. I'm not a regular. Call my doctor. It’s like I'm fighting for myself and advocating for myself. There’s been times where they refused to treat me. [...] That’s the reason why my grandmother and my aunt died, because there was so many doctors that were uneducated and didn’t really know how to treat sickle cell and that’s why they passed away. One hospital over medicated them and then another hospital didn’t do anything at all because they didn’t know. ” -Patient Patients with SCD rely on the ER as part of their care, but the experience is so poor that many avoid going until they can't manage their crisis at home anymore. ER protocols for SCD vary or aren't in place at all, and ER clinicians are often unfamiliar with SCD. This results in long wait times and inadequate treatment in what could be a life-threatening crisis. Patients also face racial bias and drug-seeking stigma from clinicians in the ER and beyond. These factors force patients to forego the ER or ask to be hospitalized in hopes of getting more knowledgeable care (which is expensive and time-consuming, not an option for those with less resources). Patients often deploy strategies for coping with these issues, with varying levels of success: projecting credibility to connect with clinicians by bringing an advocate, modulating communication styles, and/or concealing their pain; going to "better" ERs often far from their homes, even if access to transportation is a barrier.   Challenges How might we help improve and crystalize SCD protocols for personnel in the Emergency Department? How might we help patients find and access SCD-friendly medical centers and emergency departments? How might we remove racial and social bias against patients with SCD in the Emergency Department? How might we ensure that individualized SCD care plans are followed by ER providers? How might we improve education around SCD to empower patients to get better care in the ER? How might we improve access to resources (payment, support network, transportation and others) to make going to the ER an easier decision for the patient? How might we improve access to patient advocates and support services during the COVID-19 pandemic based on current restrictions?   Learn More: Inspiration: Areas of Opportunity  > Recommended Reading > Data Sets  >

7
7
1
9
Join In
Healthathon Challenges

“ I'm not against a transplant, but at the end of the day, it may not work for everyone. I have friends that it did not work for. So, I just want to be at a hospital and have doctors that care about me and my feelings and are not just trying to push treatments and everything on me if that’s not what I want to do. ” -Patient “ You have all these specialties and all these specialists and everything for cancer or they want to do this for HIV, but why not sickle cell. Why is there so much discrimination or stigma tied to sickle cell disease? One of the first blood diseases, why? ” -Patient “ Here they really don't know what to do. So I'd be there and they have to figure out what to do and then they get you medicines that don’t work and admit me to the hospital and then when I'm in the hospital they don’t know how to treat me when I'm in the hospital, so it’s basically real different down here. So that’s why I feel that I really need a hematologist down here. ” -Patient Identifying pathways to care and sustainable treatment is perhaps the biggest challenge facing SCD patients and those who provide their care. Barriers include lack of treatment options, particularly for adults; lack of education and access to information for patients and providers; lack of awareness of clinical research opportunities; lack of specialists in SCD who can develop individualized care plans with patients; no incentives to providers for care coordination and patient education needed to achieve treatment development and compliance; drug-seeking stigma and racial bias in healthcare, which causes mutual distrust in the patient-provider relationship; financial coverage of treatments; lack of social support for vulnerable patients. Challenges How might we reduce racial and drug-seeking bias in healthcare? How might we increase access to a wider range of treatment options for patients everywhere? How might we increase SCD knowledge in healthcare? How might we make patients and providers aware of and receptive to new treatment options and clinical research opportunities? How might we facilitate financial access to treatments? Learn More: Inspiration: Areas of Opportunity  > Recommended Reading > Data Sets >

2
2
0
3
Join In
Communications

This space is for you to connect with other Healthathon collaborators. Introduce yourself and tell your Healthathon collaborators a bit about yourself, where you are joining us from, the reason you’re taking part and your hopes for the future of the sickle cell disease treatment. To introduce yourself: Click 'Post a Solution' Register if you haven't already A modal will pop up with the title 'Post an Idea' Add an image of yourself if you would like to do so Under 'Give your idea a title', add a title with your name introducing yourself Under 'Describe your idea', add a sentence telling us a bit about yourself, where you are joining us from, the reason you’re taking part and your hopes for the future of the sickle cell disease treatment. Press the publish button and you are good to go!

1
0
2
2
Join In
Communications

Here is your opportunity to ask any questions you have about the Healthathon, including resources, terms of participation, assessment of submissions, recognition, timelines, and next steps.  To ask a question: Click 'Post a Solution' Register if you haven't already A modal will pop up with the title 'Post an Idea' Add an image if you would like to do so Under 'Give your idea a title', add a title with your question Under 'Describe your idea', add a brief sentence with more details Press the publish button and you are good to go!

5
2
6
6
Join In
Communications

If you're interested in forming a team with others to enter a submission into the Healthathon, comment and we will help join those interested together to collaborate virtually.  To make it easier to find teammates, we've created two posts where you can comment: Teams Looking for Individuals Individuals Looking for Team Members If you have a team for the Healthathon and you're looking for people to join up with your team, click on  Teams Looking for Individuals , scroll to the end, type in a comment, and press the button 'Post publicly. If you are an individual with an idea and you're looking for teammates, click on  Individuals Looking for Team Members , scroll to the end, type in a comment, and press the button 'Post publicly.   For any comment, we suggest you include the following: Your Name Your Email Your Focus Area Any other details you would like the community to know

2
2
5
5
Join In
Image thumbnail for challenge entitled How could sustainable treatment be improved?
Archived
Healthathon Challenges

“ I'm not against a transplant, but at the end of the day, it may not work for everyone. I have friends that it did not work for. So, I just want to be at a hospital and have doctors that care about me and my feelings and are not just trying to push treatments and everything on me if that’s not what I want to do. ” -Patient “ You have all these specialties and all these specialists and everything for cancer or they want to do this for HIV, but why not sickle cell. Why is there so much discrimination or stigma tied to sickle cell disease? One of the first blood diseases, why? ” -Patient “ Here they really don't know what to do. So I'd be there and they have to figure out what to do and then they get you medicines that don’t work and admit me to the hospital and then when I'm in the hospital they don’t know how to treat me when I'm in the hospital, so it’s basically real different down here. So that’s why I feel that I really need a hematologist down here. ” -Patient Identifying pathways to care and sustainable treatment is perhaps the biggest challenge facing SCD patients and those who provide their care. Barriers include lack of treatment options, particularly for adults; lack of education and access to information for patients and providers; lack of awareness of clinical research opportunities; lack of specialists in SCD who can develop individualized care plans with patients; no incentives to providers for care coordination and patient education needed to achieve treatment development and compliance; drug-seeking stigma and racial bias in healthcare, which causes mutual distrust in the patient-provider relationship; financial coverage of treatments; lack of social support for vulnerable patients. Challenges How might we reduce racial and drug-seeking bias in healthcare? How might we increase access to a wider range of treatment options for patients everywhere? How might we increase SCD knowledge in healthcare? How might we make patients and providers aware of and receptive to new treatment options and clinical research opportunities? How might we facilitate financial access to treatments? Learn More: Inspiration: Areas of Opportunity  > Recommended Reading > Data Sets (coming soon)

1
1
0
2
View
Image thumbnail for challenge entitled How could Emergency Room patient experience be improved?
Archived
Healthathon Challenges

Hospital emergency departments have varying intake protocols for SCD patients, and some have no protocols at all, which creates confusion and challenges for patients seeking care. The lack of specialists in Sickle Cell Disease and poor access to treatment resources creates challenges for patients who may not have people to advocate for them or individualized care plans that they can easily present to ED physicians. As a result, many ED doctors and nurses are not trained in administering the proper medications or correctly diagnosing a patient’s symptoms. These issues can be compounded by racial bias and social stigmas towards patients seeking opioids. Many patients have to drive to select emergency departments for specialized care, which can often be daunting if that emergency department is far away. What data-driven solutions could help improve the patient experience when visiting the emergency department?

3
12
6
10
View
Image thumbnail for challenge entitled Pediatric to adult care for SCD patients - What could improve the transition?
Archived
Healthathon Challenges

As a core part of transitioning from pediatric to adult care, Sickle Cell Disease patients face the challenge of not having their data transferred to their adult providers and across providers. When providers do get patient’s care plans, they may be suspicious of those plans - particularly their recommendations on pain medication - if they don’t come directly from a provider within their system. When many patients leave their pediatrician at 18, they face numerous hurdles including identifying which care options work for them, insurance options (potentially including Medicaid), and places of care that specialize in SCD treatment, among other obstacles. What data-driven solutions could help improve the transition from pediatric to adult care for SCD patients?

2
7
2
7
View
Share