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Guidance for a Nonprofit Patient Advocacy Portal on AWS

Overview

This Guidance provides nonprofit organizations, health information exchanges, and healthcare provider networks a way to curate personal health information (PHI) on behalf of patients. Patient advocacy nonprofits serve as a PHI broker between patients and researchers. These nonprofits only share PHI if they have consent and can inform patients about specific research and discoveries derived from patient data. This reinforces a patient’s willingness to share PHI, accelerating research outcomes. This Guidance helps nonprofits ingest, transform, anonymize, and deliver PHI data to academic and commercial research development organizations, all while keeping the patient informed and protecting patient consent.

For additional support in setting up an end-to-end framework for multimodal healthcare data, visit Guidance for Multi-Modal Data Analysis with AWS Health and ML Services.

How it works

These technical details feature an architecture diagram to illustrate how to effectively use this solution. The architecture diagram shows the key components and their interactions, providing an overview of the architecture's structure and functionality step-by-step.

Download the architecture diagram

Well-Architected Pillars

The architecture diagram above is an example of a Solution created with Well-Architected best practices in mind. To be fully Well-Architected, you should follow as many Well-Architected best practices as possible.

Use infrastructure as code (IaC) with AWS CodePipeline or other continuous integration, continuous deployment (CI/CD) tools for fast iteration and consistent deployments. Use Amazon CloudWatch for application and infrastructure monitoring.

Read the Operational Excellence whitepaper 

The services in this Guidance provide encryption in transit and at rest. You can use AWS Identity and Access Management (IAM), AWS Key Management Service (AWS KMS), and AWS Certificate Manager to manage user and role-based access, encryption keys, and secure socket layer (SSL)/transport layer security (TLS) X.509 certificates.

Read the Security whitepaper 

All services in this Guidance have service quotas. AWS service quotas prevent unexpected scaling up of the managed services in this Guidance. We recommend that you test this Guidance at scale to identify and address service quotas.

Read the Reliability whitepaper 

Use synthetic data and experiment with a small number of patient records before scaling up or onboarding real patient records. Additionally, you should deploy this Guidance in the AWS Region that is closest to end users. You can extend this Guidance through Amazon CloudFront .

Read the Performance Efficiency whitepaper 

This Guidance minimizes data transfer charges by performing data analytics in the AWS Cloud. Additionally, you can use the AWS Pricing Calculator to evaluate cost based on the services you deploy. No software licenses are required, though you may choose to add licensed software as needed.

Read the Cost Optimization whitepaper 

The resources in this Guidance scale up and down with demand, so they require only the minimum resources to operate.

Read the Sustainability whitepaper 

Related content

Guidance for Multi-Modal Data Analysis with AWS Health and ML Services

This Guidance demonstrates how to set up an end-to-end framework to analyze multimodal healthcare and life sciences (HCLS) data.

Learn more

Disclaimer

The sample code; software libraries; command line tools; proofs of concept; templates; or other related technology (including any of the foregoing that are provided by our personnel) is provided to you as AWS Content under the AWS Customer Agreement, or the relevant written agreement between you and AWS (whichever applies). You should not use this AWS Content in your production accounts, or on production or other critical data. You are responsible for testing, securing, and optimizing the AWS Content, such as sample code, as appropriate for production grade use based on your specific quality control practices and standards. Deploying AWS Content may incur AWS charges for creating or using AWS chargeable resources, such as running Amazon EC2 instances or using Amazon S3 storage.