HydroAssist®

What is the name of your organization?

Hydrocephalus Association

What is the name of your solution?

HydroAssist®

Provide a one-line summary of your solution.

Empowering hydrocephalus patients to take control of their care while providing never-tracked insights to research scientists.

In what city, town, or region is your solution team headquartered?

In what country is your solution team headquartered?

• United States

In which countries do you currently operate?

• United States

What specific problem are you solving?

Imagine having a headache and two hours later finding yourself in a surgical suite prepped for brain surgery. This is the life of uncertainty and unpredictability faced by individuals living with hydrocephalus. Hydrocephalus is a chronic neurological condition that has no cure and for which the only treatment requires brain surgery. Surgical intervention is often unplanned, as the primary device used to drain fluid from the brain - the shunt - has the highest failure rate of any medical device on the market and can fail at any time without warning. 40% of shunts will fail in the first 2 years of implantation and 80% will fail within 10 years. An alternative neurosurgical treatment eliminating the use of a shunt - an endoscopic third ventriculostomy (ETV) - can close, trapping fluid in the brain. The condition can be fatal if not attended to quickly. There are approximately 200,000 children and adults in the U.S. living with pediatric-onset hydrocephalus. Access to close and competent neurosurgical care is imperative for protecting the brain from irreversible damage and survival.

Patients and parents need a way to track symptoms over time and share those with their doctor so that they can identify a problem early and so that a family can plan for medical intervention and/or hospital admission. Apart from pen and paper, this does not exist. Furthermore, patients need to communicate the details of their current treatment to advocate for proper care with emergency personnel who often do not know about hydrocephalus and the urgency of intervention. Incredibly, the make, model, and setting of one’s shunt valve is typically not known by the patient or loved one because it is either not communicated at the time of implantation or the information is lost. Further, medical records and MRI/CT scans are not readily available, particularly if a patient is being seen at another medical facility. For hydrocephalus patients in countries not allowing patient access to electronic medical records, communicating their treatment and medical history rests solely on the individual and family who are typically under emotional duress and may not have the tools to store or communicate the information. In some cases, the symptoms being experienced by a patient - headache, vertigo, vomiting, dementia-like behavior - can rob a patient of the ability to verbally communicate at all.

What is your solution?

HydroAssist® is a free mobile app built for both iOS and Android platforms intentionally designed as both an educational and a patient empowerment tool. The app allows patients to record and store their entire hydrocephalus treatment history, imaging (MRIs, CTs, X-rays), and medical documents. The app stores every U.S. FDA-approved medical device used to treat hydrocephalus including shunts, flushing devices, and casings. Patients can also store detailed information about their diagnosis, current medications, and other information they choose, as well as medical and emergency contact information. Treatment reports can be generated and shared via email. Patients can also track their symptoms over time and send them to their treating physician via text or email.

Hydrocephalus patients build support systems around themselves and need loved ones to be able to assist in the management of their condition. The app puts the patient at the center. Primary users can invite authorized users to assist in managing patient profiles by assigning various levels of permissions for each module within the app. Permissions include none, view, add, edit, and delete rights. Now, a mother, for example, can invite a father to co-manage their child’s information, allowing for real-time updates and access to the information. Medical team contact information as well as emergency contacts are stored in the app. Users also have access to educational resources about their condition and a physician’s directory to find a nearby doctor wherever they may be.

Who does your solution serve, and in what ways will the solution impact their lives?

One in 770 babies (4,750) will develop hydrocephalus each year from various causes including genetic, fetal anomalies (eg. spina bifida, Dandy Walker syndrome, Chiari malformation), brain bleeds, stroke, brain tumor, brain infection, or traumatic brain injury. Many have comorbid conditions including epilepsy, cerebral palsy, autism, intellectual disabilities, physical disabilities, developmental delays, ADHD, learning disabilities, and memory challenges. Because of the high failure rate of the shunt, it is not uncommon for children to have more brain surgeries than birthdays during their elementary school years. This life of uncertainty and hypervigilance subjects both patients and families to incredible mental duress. A recent study found that 52% of parents ascribe their symptoms of post-traumatic stress syndrome with their child’s hydrocephalus. Every aspect of life is impacted (ie: sports, vacations), so as not to venture too far from their neurosurgical team or a center that can manage an emergency.

Pediatric neurosurgeons, pediatricians, and other specialized doctors feel the burden of the condition as they try to support the patient’s ongoing medical, social, and educational needs. And there is a care cliff for approximately 24K teenagers transitioning from the pediatric to adult health care systems. Adult neurosurgeons do not want to take on hydrocephalus patients, who require routine care. Many pediatric patients have extensive medical records and a complicated medical history which can include intellectual and/or physical disabilities. Neurosurgeons are accustomed to “fixing” a problem that allows an individual to return to their life or to be under the primary care of another medical professional, versus providing ongoing care. They have little financial incentive to take on care, as the payment for shunt revisions and office visits is low. Transitioning young adults and adult patients find themselves faced with nowhere to go to receive care, increasing the burden of managing their condition.

The paucity in care is particularly dire for individuals living in rural areas in the U.S. or in countries with a low neurosurgeon headcount. It is not uncommon for families in the U.S. to drive over 2 hours for a routine visit with their neurosurgeon or neurologist. In sub-Saharan African countries, it can be a two-day walk to a community health clinic where a family can then be transported to a hospital.

HydroAssist® provides patients with access to their information as needed, on their mobile device. It allows them to track symptoms, helping them see patterns emerging that could indicate a problem with their current treatment. This facilitates meaningful doctor-patient dialogue, allowing patients to engage in shared decision-making around their condition and plan for necessary interventions. It is particularly important for families caring for patients with intellectual or cognitive disabilities. It educates patients on what is in their bodies so that they can be their own advocates, particularly in supporting young adults’ journey from the pediatric to adult healthcare setting. Addressing these needs has far-reaching benefits on the mental well-being of both patients and family members. Patients report feeling like they have the freedom to move independently through their lives and the world.

Which dimension of the Challenge does your solution most closely address?

What is your solution’s stage of development?

Please share details about why you selected the stage above.

HydroAssist® version 6 is available for free in both the App Store and Google Play. The app is coded to adhere to GDPR data privacy standards. The data is housed in the AWS environment, with quarterly security audits. There are currently 5,900 active users of the app, with the top users located in the United States, United Kingdom, Canada, and Australia.

Launched in 2016, the app has evolved from a simple means for patients to record their current treatment and store it on their mobile device to a multi-module cloud-based app. The latest version contains patient-requested features including the ability to manage multiple patient profiles (eg. families with multiple children with hydrocephalus), the ability to store medical documents and neuroimages, and the ability to track symptoms over time. Multiple individuals can assist in managing a patient’s medical information through permission-based access. Each version of the app is tested by a focus group of patients, caregivers, and medical providers. Coding has started, but is currently on hold, for the process of transferring patient profile ownership, facilitating young adults owning their medical information.

What makes your solution innovative?

The main means for patients to record their current treatment was a paper card, similar to a business card, where they could write down the make, model, and setting of their shunt valve. This could be shown to emergency medical providers, radiologists, and other doctors, as needed. Many patients never received the card. For those that did, cards were lost, damaged, or worn over time. The advent of mobile apps allowed for the digitization of this card, which led to the first version of HydroAssist®. Imaging has continued to lag behind so, while many patients in the U.S. can access their medical record and even neuroimages through apps such as MyChart, these systems cannot be accessed across medical institutions by doctors. Other countries, like the UK, do not have user portals to access medical records. When patients request their MRIs or catscans, they are given their images on CD (not a thumb drive) to take with them if they are traveling. These barriers still challenge both doctors and patients. Doctors needed quick access to three key brain images to aid in the evaluation of a visiting patient, which led to the addition of the Image Library in the app. With the primary hydrocephalus medical information and history in the app, it was a natural evolution to include the ability for patients to track their symptoms and share those with their doctor.

The simplicty of uniting and digitizing has improved the lives of patients, encouraged doctor-patient communication and shared decision-making, and assisted in smoothing the journey for a young adult to the adult medical care system. We are just starting to see these benefits and the long-term impact they can have on patients and within the medical system.

However, the broader impact of the app is in the potential to support research and development that could lead to new interventions, treatments, and programs for patients and families. The data stored in HydroAssist® is data that has never been collected from patients living with hydrocephalus. It is a rich tapestry of the patient's lived experience side by side with treatment type and effectiveness. Researchers and industry have expressed interest in accessing the data as is. We see the HydroAssist® data as one part of a larger robust data repository that can bring together our patient-reported registry data and clinical data from our research networks to create a holistic view of the patient experience. This data set does not currently exist. There is no mandated reporting of hydrocephalus by the CDC.

Why are you applying to the Prize?

HydroAssist® faces a financial challenge that is creating a barrier to growth and potential future self-sustaining revenue channels. The Hydrocephalus Association (HA) is a small non-profit with a $4 million annual operating budget. A gift from a private donor for the app has been exhausted. A small portion of the Amgen prize would allow us to complete the final feature set for the current version of the app as well as launch a marketing campaign to our user base. The association has a limited marketing budget and has been waiting to aggressively market the app until the release of this current version which incorporates the majority of user-requested features. Most marketing over the last 6 years has been driven by doctors asking their patients to begin using the app to assist in managing their care. The provider referrals indicate that doctors acknowledge and approve of its usefulness. 

The majority of the prize would focus on creating the interface that would facilitate querying the dataset for various stakeholders. We chose AWS as our data repository so that we could leverage their data visualization tools, machine learning, and AI to return meaningful de-identified, aggregated query results. The costs for this work would include the developer fees as well as legal fees for consultations to ensure that we are meeting all data privacy and security requirements to protect our patient data. Additionally, as the data will be used for research, we will engage a reputable third-party Institutional Review Board (IRB) to oversee the use of the data. Finally, the app will need to be coded to accommodate and track patient consent to opt-in to participate in any use of their de-identified data.

Who is the Team Lead for your solution?

Amanda Garzon, Chief Operations Officer

How are you and your team well-positioned to deliver this solution?

The HydroAssist® design team is comprised of a pediatric neurosurgeon, an adult neurologist, and the mother of a 23 year-old living with hydrocephalus who is also the COO of the Hydrocephalus Association. Dr. Jesse Skoch of Cincinnati Children’s Hospital is both a research scientist and a dedicated neurosurgeon. 40% of his patients are children living with hydrocephalus. Dr. Abhay Moghekar runs the Hydrocephalus and Cerebral Fluid Center at Johns Hopkins Medicine, is a research scientist with the Adult Hydrocephalus Clinical Research Network, and an advocate for hydrocephalus among his neurology colleagues. Amanda Garzon lives the hydrocephalus journey with her daughter who has undergone 17 brain surgeries to manage her hydrocephalus. Her daughter lives with epilepsy, executive function challenges, ADHD, memory impairments, and anxiety. Amanda oversees support, education, and advocacy programs at HA, leads video series, webinars, and educational sessions on various medical and lifestyle topics related to the hydrocephalus journey, and runs a support group in the Washington, DC area. While these three individuals bring their personal and professional experiences into the design of the app, they also understand that each patient and family’s journey with the condition is unique. Therefore, a focus group was formed pulling from a diverse group of individuals across age, etiology, treatment type, cognitive ability, race, educational attainment, socioeconomic strata, and geographic location. This group tests each version of the app prior to launch and provides suggestions and feedback on the roadmap of the app, assisting in prioritizing features and functionality. HA is able to unite a diverse and robust focus group because of its active engagement within the community through its various support groups, support hotline, and community events.

What type of organization is your solution team?

Nonprofit