Nosh: Nostr for Health

Approximately half of the global population is deprived of vital health services, including family planning, immunizations, and sexual reproductive health. These enduring disparities prevail within and across nations, disproportionately affecting marginalized communities, particularly women and girls, who face consistently poorer health outcomes. The COVID-19 pandemic has brought attention to the preexisting inequities in health and societal structures, placing women and girls at the highest vulnerability solely based on their gender. Alarming global data reveals that, during the pandemic, approximately 12 million women in economically disadvantaged nations faced limited access to contraception, leading to 7 million unintended pregnancies as a result of disrupted healthcare services.

Moreover, the UN has reported that roughly half of women between the ages of 15 and 49 cannot make autonomous decisions regarding their bodies, sex with partners or husbands, and contraception. In the United States, girls aged 13-17 have limited access to confidential reproductive services without a parent/guardian’s consent, which varies by state, and if they do receive care, they have no verifiable way to update their EMR in privacy. These barriers inhibit girls from seeking and receiving the healthcare they need. As such, more vulnerable populations will likely suffer from restrictive healthcare access.

To support girls between the ages of 13-17 to seek and receive the care they need, the PathCheck Foundation aims to create a verifiable way for any girl to seek sexual and reproductive healthcare and receive a shareable record of care that they can then merge with their EMR once they turn 18. This record can also verify out-of-pocket expenses for crowdfunding or health cost sharing.

PathCheck’s solution to supporting access and verifiable record of health for women and girls builds upon its novel open source computational privacy software launched during the COVID-19 pandemic. A spinout of MIT, PathCheck has begun the process of exploring using Nostr, a new, open protocol for social networking that has been embraced by millions of users since the debut of Damus and Amethyst.

Nostr offers an ideal platform for efficient information exchange between patients and healthcare providers. Currently, Nostr encompasses two apps, Amethyst and Damus, enabling users to securely communicate and share verified messages and posts. Nostr, which stands for Notes and other stuff over relays, operates as an open protocol designed to establish a censorship-resistant network for sharing data. By eliminating the dependence on central servers, Nostr empowers users to run their own clients on their mobile devices, minimizing potential cyber-attack vulnerabilities. Users retain ownership of their account data and identities, allowing them to selectively share information with trusted individuals through secure relays, all authenticated by a private key. The system also facilitates cross-site interoperability, enabling users to request and access user data across social networks via relays.

The PathCheck Foundation plans to use the same concept for women’s and girls' health through Nosh. By building on top of Nostr, PathCheck will leverage its growing developer community and available smartphone clients like Damus and Amethyst while combining  HL7 FHIR and WHO SMART Guidelines to maximize interoperability with all nation states, agencies and providers. And like Nostr, no one will own Nosh, allowing anyone to quickly and easily develop new clients that can leverage these new standards. 

With Nosh, women and girls are the true owners of their health data and EMRs without needing to log into a central server. Sharing their EMR over various private relays with trusted, registered healthcare providers who can receive the EMR using HL7 FHIR standards give them direct access without consent. And because these relays would exist within ad-hoc VPN tunnels, there is virtually no attack surface for hackers to steal important data.

It is important to note that implementing a decentralized identity management system requires collaboration and coordination between various stakeholders, including patients, healthcare providers, regulators, and technology providers. It also requires careful consideration of data privacy and security concerns and the potential risks and benefits of such a system. That is why PathCheck Foundation has spearheaded the Open Protocols for Health Data (OPHD) Working Group to explore opportunities and benefits of using open protocols such as Nostr for digital identity documentation to improve resilience in systems using patient data and healthcare policies. 

Completing NOSH will impact women’s and girls’ health by allowing them to communicate with providers in real-time. Nosh fills a gap with a technology solution that increases engagement and empowers patients with control over their own health data, allowing them to share only with those they trust, privately.

This solution will help women and girls between the ages of 13-17 who are seeking reproductive and sexual healthcare. Reproductive and sexual healthcare rights are human rights and Nosh is an opportunity to support women and girls to receive the healthcare they need without penalty. 

Ensuring the rights of women and girls to health, privacy, education, and nondiscrimination is crucial. This solution prioritizes comprehensive sexual and reproductive healthcare, enabling access to essential services that empower women and girls to make informed decisions about their reproductive choices. It encompasses crucial aspects such as family planning, safe pregnancy and delivery, sexual well-being, and treatment for curable sexually transmitted infections. By expanding services through Nosh, we can establish resilient health systems and communities that prioritize the well-being and agency of women and girls.

The PathCheck Foundation and its team of researchers, scientists, technologists and social entrepreneurs are well-positioned to create Nosh based on the organization’s strong track record in developing open source technology and software.

PathCheck’s free, open source software harnessed the tremendous computational power of smartphones during the COVID-19 pandemic. PathCheck’s “NoPeek” privacy mobile applications were developed for exposure notifications, contact tracing, and vaccine verification. These free, personalized, open source tools and mobile applications captured crowdsourced health information, analyzed public/precision health data, and engaged citizens via user-friendly applications.

Our leadership team has deep expertise in public health, medicine, policy, epidemiology/infectious disease, software development, bioinformatics, human-centered design, and ethics and behavior.

The PathCheck foundation has received permission to use the Amythest app and framework to develop Nosh, its new open protocol to privately exchange health data. PathCheck is about to enter into its testing phase. 

PathCheck is currently not serving users yet.

With the Solve platform, we can achieve a diversified ecosystem that provides resources that can achieve healthcare equity. 

Through Solve, PathCheck seeks to engage with partners that will strengthen this initiative. Implementing a decentralized identity management system requires collaboration and coordination between various stakeholders, including patients, healthcare providers, regulators, and technology providers. It also requires careful consideration of data privacy and security concerns and the potential risks and benefits of such a system. The Solve community is poised to enable PathCheck to take this idea to the next level to ensure the most impact.

Sharing health data is a cumbersome process that does not give patients ownership of it. Using open protocols built across secure relays is a novel approach to solving the patient ownership problem. This approach also ensures that correct health data can be shared with providers immediately and securely with much less likelihood for patient matching.

Overmore, this solution creates a way for any girl aged 13-17 to seek sexual and reproductive healthcare and receive a shareable record of their care that they can merge with their EMR once they turn 18 or share with family, friends, or trusted advisors. Building upon a an open protocol such as Nostr could be a game changer.

Impact Goals over the next year:

1. To give girls aged 13-17 a private and secure solution to seek, receive and capture health services. We will measure this impact based on the number of girls using Nosh to receive the reproductive healthcare they need. We will also work with providers and partners to understand pain points and where NOSH can be most effective in supporting this age group. 

2. To understand the barriers girls 13-17 face to seek and receive reproductive care. We will survey girls in this age group to understand what barriers they face in receiving reproductive care. Based on this feedback we will deploy Nosh and measure usage.   

3. To work and partner with providers on understanding how this technology can support EMR data that will support giving patients the care they deserve. Through these partnerships, and based on recommendations, we will deploy Nosh to also ensure correct data is shared with providers.    

Impact Goal over five years:

1. To become the solution used by girls 13-17 to receive confidential, reproductive care and to share data with their provider. We will continue to test, and modify the solution based on 5-year progress. 

2. To create a framework that becomes the standard for healthcare data sharing and allowing patients to own their health data. This goal will be reached by continuing to partner with healthcare providers, technologists, and computer scientists to create the framework in which health data is securely shared. 

Milestones and measurement: 

1. Prototyping and testing to a population of 50 users who are girls 13-17. 

2. Survey 100 girls 13-17 to understand barriers and concerns to receiving confidential reproductive healthcare. 

3. Consult meetings with practitioners and health providers. 

4. Continue open protocol and software refinement and launching updates.  

Activity: Girls aged 13-17 have the opportunity to use NOSH in order to confidentially receive reproductive care without the consent of a guardian, to seek care in states with restrictions and then merge that information with their EMR once they turn 18.

Outcomes: Girls who do not have access to care, or do not know where to look for care can reach out to providers securely to receive essential services. Data is not shared with anyone unless a user chooses to trust that end user.  

Short Term: Girls are given the authority and autonomy to make decisions over their bodies such as when to have babies, how to have a satisfactory sex life, and to decide to take contraceptives.  

Long Term: Girls become women who have the opportunity to seek more education, grow their earning potential, contribute to the economy and enhance society. 

The core technology enabling the sharing of health data is the open protocol, Nostr. This open protocol was built to reduce censorship on data-sharing networks to improve social networks as a whole. 

We are leveraging Nostr's open protocol and relays to provide girls aged 13-17 to store and share their data confidentially. This technology allows individuals to store and share their data using a private key assigned to them. The Nostr protocol, along with decentralized identification, shares data by user request to create ‘decentralized’ social networks. 

The PathCheck Foundation would not exist today without the diversity of scientists, medical professionals, technologists, entrepreneurs, and volunteers worldwide who worked to launch the nonprofit organization during the pandemic.

Throughout its existence, the organization has been focused on advocating for gender and racial equality and promoting initiatives that help reduce the racial and gender gap in the health ecosystem exacerbated by the pandemic. 

PathCheck Foundation partnered with members from the Hood Medicine Initiative to support underserved communities to advocate for science, health education, and preventative medicine through the pandemic. The foundation is also committed to empowering individuals by providing education and volunteer opportunities that expand professional experiences.

PathCheck Foundation has a business model similar to the Linux Foundation wherein we sell consulting services to organizations that use our open source products. These organizations may include government agencies, healthcare systems, and healthcare startups. 

We will use funds from MIT Solve to complete our development of Nosh and demonstrate its capabilities to the over 4,000 healthcare organizations and public health agencies that are among our Global Trust Registry developed under WHO SMART Guidelines. PathCheck has a track record of success in generating revenue from consulting services to help other organizations integrate or launch our previous services.

In 2020-21, PathCheck raised 2.6 million USD in donations and grants throughout the pandemic. 

PathCheck generated 1.2 million USD in revenue for a total of 3.8 million USD. This is based on the work done with various state and county-level governments for the EN solution we provided. Recently, we partnered with WHO to work on universal health credentials.

Additionally, the World Health Organization (WHO) selected the PathCheck Foundation to support its effort to ease the process for its member states to implement digital vaccination certification. In August of 2021, WHO proposed Digital Documentation of COVID-19 Certificates as a  mechanism by which a person’s COVID-19-related health data can be digitally documented via an electronic certificate. PathCheck is building the organization’s reference implementation of a Universal Verifier application that can be extended and published by 194 member states.