National ME/CFS Patient Registry: Meet the Community Guide – Jennie SpotilaFebruary 22, 2018

The Solve ME/CFS Initiative (SMCI) National ME/CFS Patient Registry, developed in partnership with the Genetic Alliance and Platform for Engaging Everyone Responsibly (PEER), is readying for launch in the first half of 2018. As part of the roll-out, we will be publishing a series of articles in Research 1st with information about the features and benefits of this new platform. This series begins with a look at the Registry Community Guides.

Community Guides provide guidance on how to individualize the privacy settings available in PEER. The Guides are helping SMCI shape and validate its approach to soliciting patient information. A special thank you to renowned advocate Jennie Spotila ( who lent her expertise to our project for this first look at the registry.

Jennie Spotila
ME Activist and Teller of Stories

I have been living with ME/CFS since 1994, and am a vocal advocate for more (and better) research. Over the years, I have served our community in many capacities, including as a Board member for SMCI, a patient representative at FDA, and an ambassador for PCORI. We must find ways to facilitate research on ME/CFS, while still protecting our privacy. I think the Solve ME/CFS Registry empowers you to do both.



Meet the guide! Jennie’s Community Guide profile and an overall rating of her personal privacy concern level.

PEER is an innovative platform designed to enable data sharing and research, while upholding privacy and respect for individuals sharing their health data. Individuals who engage with the SMCI National ME/CFS Patient Registry will have a direct access portal to complete surveys, and manage their own privacy settings and information. SMCI is the Registry Sponsor and we are considered stewards, rather than owners, of the health data provided by participants. In this capacity, the sponsor maintains trust between participants sharing data and researchers seeking access to the data.

Views on privacy and disclosure of health information for research are informed by community-level and individual perspectives. The various trade-offs between benefits and risks associated with greater levels of accessibility or sharing of data feed into levels of concern around privacy. The PEER platform uses a tool called PrivacyLayer®, powered by Private Access, Inc. that allows Registry participants to weigh privacy considerations and customize who sees their data, and how their data is used.

Types of Data Sharing in PEER
1. Find/Analyze
A researcher who has been given this level of access is able to view all the responses in the registry and query the data, but would not be able to identify the participant to specific responses.
2. Export/Link
Enables approved researchers to export de-identified data out of the PEER system to conduct their own analysis. The exported data would not contain any personally identifiable information and is intended for researchers to conduct more robust analysis outside the platform.
3. Get Contact Information
Allows researchers with this level of access to either view participant contact information or send secure messages through the PEER.


The PEER Patient Registry system allows for a high degree of granularity in setting permission levels for the three types of data sharing. Participants choose whether to allow or deny researchers or networks (known as privacy directives in PEER) the ability to view their information and determine how the data can be used in the system. There is also an ask me setting, applicable to some privacy directives, that will be explored in the next article of this series.

When participants create a user profile, they can default to SMCI’s recommended privacy settings or customize their own settings. If participants choose to customize, they are given the option to view recommended settings from the Registry Community Guides. The Guide profiles serve as a resource for participants on how to create privacy settings that best reflect their values and beliefs about data sharing.

Participants will be able to select from a diverse range of options. For example, someone new to the Registry can view Jennie’s Guide profile and her recommended privacy settings at three different levels – from someone with low, moderate, or high concerns about privacy. They can default to one of the recommended settings or use it as a framework to customize their permissions.

A section of the privacy directives dashboard that shows Jennie Spotila’s recommended privacy settings for SMCI and researchers recommended by SMCI from the perspective of someone with moderate privacy concerns.

Next month, we will meet another SMCI community guide – Brian Vastag – and learn more about the privacy directives dashboard. 

About the PEER project: Originally made possible by a grant from the Robert Wood Johnson Foundation White Label PEER project, an innovative, patient-centered research network. This grant program is managed by Genetic Alliance, a leading advocacy organization committed to transforming health through genetics and promoting novel partnerships and access to information to enable translational research. This support further establishes SMCI’s commitment to connecting patients with researchers and expediting the discovery process.