Privacy preserving crowdsourcing for citizen engagement in pandemics

Crowdsourced citizen data can complement and connect incomplete and fragmented data that cripples pandemic responses. But, large scale participation requires citizens’ trust and engagement. We solve this with unique “NoPeek” privacy and personalization delivered with a free, open-source toolkit for governments and large institutions to deploy.

Ramesh Raskar, Ph.D. Professor MIT Media Lab and Founder, PathCheck Foundation 

Paul Baier, President, PathCheck Foundation (non-profit MIT spin-off)

Our goal is to fill the gaps in public health knowledge by crowdsourcing data from citizens to improve pandemic responses. 

In a pandemic, data is one of the most important tools for policymakers, public health officials, and health system agents. Citizens navigate exposure alerts, symptoms, testing, treatment, and vaccination, but much of this citizen journey is not shared with public health and remains invisible to the health system.

These gaps in data gathering, especially about activities, contacts, and status of citizens are one of the key challenges for an effective response. The data-scarce planning leads to inefficiencies, lives lost, and socio-economic costs. 

Technological app-based solutions can be used to fill in gaps, but they currently suffer from two key problems that make citizens uncooperative and disengaged: 

1. A lack of incentives for users to adopt and engage with the app and 
2. Citizen’s privacy concerns and the fear of the government becoming a surveillance state.

How can we achieve crowdsourcing, privacy, and personalized engagement in a pandemic? And how can we simultaneously provide planning tools for public health by making citizen data available in real-time?

We have 3 audiences:

1. Public health agency (PHA): We use PHA to broadly include planners at both the country and regional level, decision makers, epidemiologists studying viral dynamics, researchers and pharma companies innovating novel tests and vaccinations.

For PHAs, we create a data-rich stream of citizen activity to fill the gaps and complement other data-gathering efforts to understand case rates, the severity of symptoms, equitable deployment, and effectiveness for vulnerable populations.   

2. Organizations with large campuses (i.e. universities or large employers). We noticed that they have significant frustration waiting for governmental or cost-effective solutions. Hence, the decision-makers usually take the lead in adopting innovation in ensuring safety, encouraging adherence to procedure (e.g. frequent testing), maintaining continued operations, and managing incentive programs (e.g. automatic sick leave). So they are ideal early stage partners.

3. Citizens (including vulnerable populations)

For citizens, early exposure alerts, personalized risk scores for activities based on their health conditions, and visualizing local pandemic spread are critical. 

For vulnerable populations, our solution works for citizens without a smartphone. We developed a paper-based QR code with cryptographically tamper-evident digital signatures for citizens to engage in the test-trace-treat-vaccinate ecosystem without disclosing any personally identifiable information.

The world needs a proven toolkit for the next fast-moving public health crisis that includes software, standards, data sets, and playbooks. We achieve this by improving efficiency, trust, and equity that leads to better planning to save lives and reduce socio-economic costs.

Our toolkit is a software equivalent of UN peacekeepers, tested, trained, and ready-to-deploy. However, each government and campus needs to periodically test and update the solution, train, and run a ‘drill’ for members. This is where PathCheck crisis management software becomes a public good. 

Our open-source software is vital for pandemic responses. This will be performed while providing citizens the ability to maintain control of all data, including their identity, in a private and secure manner. 

We will provide multiple contributions to the public good:

1. Thought leadership: We contribute to research, papers and standards. To the best of our knowledge, no standards exist to record, exchange, encrypt or analyze crowdsourced population data for tracking current or future pandemics or health crises. 

2. Ensuring citizen privacy: PathCheck is currently one of the largest open-source projects for preserving privacy and influencing industry standards and commercial products.

3. Public knowledge: Open-source software, playbook, and datasets.

We create tangible benefits for each of our stakeholders.

For public health agencies, (planners, epidemiologists, researchers innovating in tests and clinical trials of vaccines) we fill data gaps and lower the cost of impact evaluation and interviews. For our pilot with Nigeria NCDC, we will conduct post-pilot stakeholders surveys to validate results.

For large organizations with campuses, we improve resilience. We will confirm effectiveness with randomized controls trials on different campuses of the same organization. We are working with the University of Alabama in the U.S. for their pilot on this.

For citizens, we offer personalized guidance during a pandemic. To validate we will conduct interviews and compare external statistics like caseload and user perception. UFESP in Brazil has an ongoing program related to this.

For vulnerable populations who don’t have smartphones, we smoothen their pandemic response using paper credentials (https://vaccine-docs.pathcheck.org/). We are already working with IDEO to design and validate the effectiveness of these paper credentials.

1. Year zero (last year), we build on existing relationships with governments and partners established in 2021.

• We have demonstrated extremely promising results in our first year.  Our team has experience in working with governments and campuses to help them deploy our solutions. 

• As a B2B solution, we play an active role in promoting adoption through our playbook and shared best practices across pilots and earlier deployments.

2. Years 1-3 we will scale with local partners and with network effects.  Having credible validation evaluations of our pilot results is essential for industry confidence.

• Scaling with local partners: Our pilots are ‘light house’ deployments on four continents, and those references will guide campus-specific implementation in other parts of the world. We work with local health-IT companies to deploy, which allows us to dramatically scale while remaining lean at PathCheck. 

• Network effect: We create a network effect by encouraging employers to suggest the app to their employees and staff on their campuses. These early adopters will in turn spread the word of the app’s usefulness to other citizens in their daily lives.

  

Goal 1: Secure pilots commitments

• Metric: 4 government entities agreeing to pilot (partially achieved)

Goal 2: Validate technology (NoPeek and other technology)  

• Metric: recommendations and privacy validated by third parties in pilot with 100 users

Goal 3: Deploy successful pilot

• Metric: success criteria pre-established for each pilot and met after 4 months.  Pilots rolled out to at least 50% of the citizens at that campus with 20% monthly active users

Goal 4: New clients

• Metric: 10 large and 10 small campuses signed by year three

Our internal metrics are:

• Thought leadership (Monthly mentions in news media, subscribers to our social media channels)

• Creating a worldwide network of health-IT companies: (numbers of companies using our software versus the number of companies attending our webinars)

• Creating a pool of talented professional volunteers: (monthly active users on Slack)

Adoption is always critical and is ultimately handled and influenced by local governments or campuses. We are focus on overcoming 3 main barriers

1. Financial: Government health agencies are often underfunded and have limited resources to deal with emerging and ongoing crises and for innovation, experimentation, and iteration. Software is also expensive and for multi-party computation, we need to convince at least two external companies to host the servers for us as by definition they need to be two different entities. We need funds to develop this free software for local governments.

2. Legal and regulatory: Our NoPeek privacy solution means no citizen data will ever be leaked. However, we need to educate and help lawyers and regulators push for solutions that truly protect citizen data privacy.

3. Education gaps: Education is needed to understand the best technical approach. Last year, some nations wanted to build significant telemetry which runs against the principles of NoPeek. Our dashboards do not include the ability to see raw details of an individual and this often frustrates public health leaders as they are accustomed to having access to all data for any specific subject.

MIT - Prof. Ramesh Raskar

Mayo Clinic - Dr. Thomas Kingsley

Stanford University Medical - Dr. Lee Sanders 

Harvard Medical School - Dr. Ranu Dhillon 

University of Cape Town (South Africa) - Max Price

Full advisor list

https://www.pathcheck.org/en/about/team

Members WHO (Vaccine Credentials), Good Health Pass, ToIP, Linux Foundation/CCI

The prestige of winning the Trinity Challenge strengthens our initiatives and helps with the barriers (financial, legal, and educational) discussed above.   Specifically

1. A Trinity Grant helps us generate matching donations.

2. Working with Trinity members helps government leaders and regional health IT companies gain confidence in our NoPeek privacy and open-source crowdsourcing software.

3. Trinity members can help us create education and outreach programs for government leaders as we explain the legal aspects of privacy, safety, and efficiency. We hope that many Trinity member educational institutes will run workshops about the benefits and NoPeek and crowdsourcing.

4. Getting expert technical support from Google/Facebook/CubeIQ/Palantir and other tech members will ensure even higher quality software.

We are very impressed with the Trinity partners and are specifically interested in working with the following to bring additional credibility and confidence to our 4 pilots.

1. The Gates Foundation – We have had initial discussions with Himanshu Nagpal and CK Cheruvettolil for funding to support our effort. Gates Foundation funding brings funds and credibility.

2. McKinsey would help with additional relationships at the government levels. Their guidance on risk management of these 4 rollouts and then post-deployment case studies would be invaluable.

3. Google and Facebook for technical support and access to mobility and symptoms data they have been releasing in this pandemic.

4. CubeIQ and Palantir for telecom data and vaccination data, e.g. Palantir have managed vaccine rollouts in the US with software like Tiberius.

Several other Trinity members can help support our 4 pilots in rollout marketing, adoption, and program design.