Integrating Ethics Into Vaccine Management Software — Lessons From the Field

Yoav Schlesinger contributed reporting to this article.

The rollout of COVID-19 vaccination efforts highlights the importance of ethical use of technology. When it comes to patient and community safety, the concern goes beyond ensuring adequate supply or appropriate scheduling tools. We now have to look at how to enable wider access to technology to schedule vaccination appointments, as well as how to ensure equitable distribution of the vaccine to underserved communities. And each jurisdiction, at the federal, state, or local level faces different challenges and needs. As we partner with these communities to develop systems for complex vaccine management, we’ve identified principles to promote the ethical use of COVID-19 vaccine tech solutions, including guidelines around the use of Vaccine Cloud.

1. Establish optimal set-up conditions for vaccine management

Vaccine management technologies should be set up as a distinct system dedicated to sensitive health or personal data, and should be maintained separately from any other existing business systems in order to limit data access. Admins who have access to data for sales, customer service, or pricing don’t need to have access to sensitive vaccine or health information — and vice versa. This is critical for ensuring confidentiality and security, and so users can trust that their data will be protected.

Vaccine management platforms should also allow multiple channels for registrant sign-ups. If sign-ups can only be performed online or via smartphone, and are only available in English, there is a serious risk of marginalizing those without access to technology, those who are less digitally literate, non-English speaking populations, and those who are only able to use lower-tech options. Having call centers ready to take inbound inquiries with scheduling capabilities — and ensuring that solutions are available in multiple languages and support accessibility best practices — are core elements of making vaccination efforts successful.

2. Set meaningful defaults and options for inclusion of all vaccine registrants

Ensure registration questions are inclusive for all vaccine registrants. What’s more, making certain fields optional by default can ensure that certain populations are not marginalized in the process. These steps build trust with your registrants and ensure you get the data needed to administer a vaccination. For example:

• Instead of asking for age, ask for a birthdate. This allows for more granular and specific calculations of vaccine eligibility.
• For gender field picklists, create more inclusivity by allowing registrants to select “transgender,” “other,” or “do not wish to disclose” instead of offering only values of “male” and “female.”
• Use inclusive language. For instance, “residents” instead of “citizens,” since permanent residents and undocumented populations are also eligible for vaccination programs.
• Not everyone has health insurance, while others may have the same national health benefits depending on the country in which they live. So, making it a required field might exclude those without it, or could lead to collecting more personal health data than needed.
• Similarly, unhoused and undocumented populations may not have a government-issued ID, so proof of identity should be considered a flexible field in the set-up flow. If a vaccine administrator needs proof of local residence, anything from a driver’s license to a utility bill should suffice.

To determine which preset values and language to use around vaccines (for example, what prioritized occupational groups or vulnerable populations to include in the registration flow to help determine eligibility), we look to public health agencies like the United States Centers for Disease Control, the European Centre for Disease Prevention and Control, or the World Health Organization.

3. Develop responsible practices for determining eligibility and prioritization

With limited vaccine inventory and vaccination appointments, vaccine eligibility and prioritization are crucial factors in the vaccine rollout. These decisions should be made in accordance with local public health guidance and should follow a rules-based — not AI-driven — approach. As a registrant goes through the sign-up flow, a simple rules-based engine can determine their eligibility for a vaccine based on their responses to questions about birthdate, occupation, health status, etc. Artificial intelligence should not be used to make those decisions or to predict or infer personal characteristics that would impact a person’s eligibility or priority for a vaccine.

Logging should be implemented in the back end of these systems so that there’s traceability for any appeals or questions about eligibility and prioritization. For example, if someone is told by the system that they are not eligible but they believe they should be, an escalation may be necessary to pinpoint what went wrong (Did they enter their birthdate incorrectly? Did they check a box “yes” when it should have been “no?”). Call center agents and others should be empowered with the information they need to best serve the public.

4. Ensure functionality for legitimate scheduling

Additionally, it’s important that individuals are able to schedule appointments for themselves or others in a timely way. A single individual should be able to legitimately perform multiple sign-ups — whether for an aging parent or a child under the age of 18, or as the manager of a homeless shelter on behalf of their residents.

At the same time, we want to prevent individuals from inappropriately holding multiple appointment slots — preventing others from being able to sign up — or, in the worst cases, selling those appointments to others. To prevent gaming the system, we recommend using two-factor authentication or reCaptcha in the background, and implementing de-duplicating processes to identify someone with multiple sign-ups (as in the case where an older adult has scheduled themselves and, at the same time, been scheduled by their well-meaning adult children). Finally, in order to ensure that equitable prioritization processes are implemented through scheduling, do not implement reusable, shareable ‘special access’ codes. Instead, consider single-use, randomly generated special access codes, or two-factor authentication, to ensure these codes are not abused.

5. Provide clear information on the scheduling website to build trust

Providing clear information in easy-to-access and easy-to-understand language can overcome some issues of vaccine hesitancy or discomfort with providing sensitive personal information to certain government authorities. In addition, creating helpful, out-of-the-box knowledge articles and disclosures can go a long way in establishing trust and transparency.

Along these same lines, including stock text in the registration flow about the vaccination process may help customers earn constituents’ trust. We suggest vaccine administrators provide two short paragraphs: one that explains how vaccination eligibility decisions are made and how prioritization and allocation works (with links to the appropriate, local guidance), and a second that includes information on the safety and efficacy of vaccines (with citations or links to public health guidance, scientific studies, and other materials). These will help create more clarity in periods of great uncertainty.

Finally, any images on the web properties should reinforce public health best practices and represent a diverse set of recipients and caregivers. Sharing images of unmasked individuals will erode confidence, while images of vaccine administrators in PPE can build trust.

6. Prioritize data privacy and ensure meaningful consent

It may also be helpful to describe how data gathered from this solution will be shared (and not shared). For example, an individual with an outstanding speeding ticket or who is not a documented resident may be wary of sharing their information with what may be perceived as “the authorities.” So, stating upfront with whom the data will be shared, and what control the recipient has over that sharing, without relying on external links to privacy policies or complex terms and conditions, can be helpful.

Beyond that, there are two types of consent that should be gathered: 

1. Meaningful consent for the provision, collection, and use of a registrant’s data and personal information 
2. Informed medical consent to receive the vaccine 

Collecting medical consent in the sign-up flow can smooth on-site processes and save valuable time when people arrive at their vaccination appointments. These forms can then be made accessible to the registrant as downloads, through a printable option, or by forwarding to an email or mailing address, so they have a clear understanding of what they have agreed to.

The process of “getting shots in arms” is logistically and technologically complex. Thousands of small decisions are made every day to create smooth digital and offline experiences. We are all committed to delivering COVID-19 vaccines in a safe and responsible way to as many people as possible. Following best practices from local health authorities, as well as considering all of the ways a technological solution can help support equitable and inclusive distribution, will speed the process and ensure that existing social inequities aren’t exacerbated by vaccine rollout efforts.