Data DIY: Becoming A Data-Centric Community

June 27, 2023

We are living in the most hopeful, rapidly evolving time in medical history with an incredible wealth of, and access to health data. The challenge for patient advocates and organization leaders now is to be as technically savvy about data as the rest of these passionate stakeholders. Knowledge is power, and we want you to be empowered data owners and stewards.

Resource 1: The Whys and Hows of Patient Data Collection: The first in a series of four workbooks designed to help rare disease patients and caregivers learn how to get the most from their own data and collaborate to improve care for all. You’ll also be inspired by real-life examples and hear the stories of rare data pioneers who will give you the knowledge and drive to move forward.

Resource 2: Data Trusts, Governance and Collection Platforms: Once you’ve identified the goals of your data collection program, your next step will be creating a process that allows you to collect, store, and share data in a way that protects the rights and privacy of each participant. Advocacy organizations are well-positioned to be good stewards of data. They understand what is important to the community and they know that good stewardship is an essential part of a data program’s success. 

Resource 3: Collaborative Research Networks: “The Collaborative Network Approach: a model for advancing patient-centric research for Castleman disease and other rare diseases,” by Mary Zuccato, Dustin Shilling and David C. Fajgenbaum, outlines an eight-step process that allows organizations to begin where they are and gradually add practices that can create a paradigm shift in the research process. Sample agreements and templates are included to help you get started. 

Resource 4: Becoming a Data-Centric Community: A strong data program is one of the most valuable assets a rare disease organization can possess. It provides a solid foundation for strategy development and decision-making.  In this workbook, you’ll hear the stories of advocacy leaders who are inventing new paradigms, breaking through barriers and achieving remarkable progress – often in surprising ways.

Download the Workbooks and Slideshows

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