NIH Needs ‘Honest Broker’ To Manage New COVID-19 Data Warehouse

issaro prakalung/Shutterstock.com

The health agency is looking for a vendor to act as a “neutral intermediary” to spur research without compromising patient privacy.

The National Institutes of Health is standing up a new research data sharing initiative around COVID-19 and needs an “honest broker” to manage the data warehouse and protect patient privacy.

NIH has stood up a number of efforts specifically to combat the COVID-19 pandemic, including a new program under the National Center for Advancing Translational Sciences called the National COVID Cohort Collaborative, or N3C.

“N3C is building a centralized national data resource that the research community can use to study COVID-19 and identify potential treatments as the pandemic continues to evolve,” according to a sources sought notice posted Wednesday to beta.SAM.gov. “Specifically, the N3C will enable the rapid collection and analysis of clinical, laboratory and diagnostic data from hospitals and health care plans. Collaborators will contribute and use COVID-19 clinical data to answer critical research questions to address the pandemic.”

To ensure the program does not run afoul of health data privacy rules, NIH “requires the services of an honest data broker for the NIH COVID-19 data warehouse to ensure the privacy and confidentiality of the clinical data it contains,” the notice states.

While NIH certainly is not interested in contracting with a dishonest vendor, “honest data broker” is an industry term used to define the work of clinical data middlemen at a time when health data remains extremely sensitive but is no longer managed by the patient.

“Prior to the age of big data, privacy was protected by individuals who maintained control over their own personal information,” researchers wrote in a paper published on PeerJ in 2015 entitled, “Establishing the role of honest broker: bridging the gap between protecting personal health data and clinical research efficiency,” cited by NIH’s National Center for Biotechnology Information.

“In other words, research subjects provided informed consent about (1) to whom, (2) how, (3) for what purpose, and (4) to what extent they would provide their personal information,” the paper continues. “However, in the current age of big data, ‘informed consent’ may no longer be a realistic and efficient method for protecting privacy.”

Instead, researchers can use the honest data brokers framework to anonymize patient data—including removing “direct and possible identifiers”—in order to further research without compromising patient privacy or requiring additional layers of consent.

“In other words, although identifiers were available when the data were collected or stored, these identifiers can be removed or unlinked from the clinical data for the intentional purpose of satisfying the consent waiver and protecting participant information before sharing data,” according to the report’s authors.

The N3C notice puts it another way: “The role of the honest broker is to stand as a neutral intermediary between the sources of clinical data for the warehouse and the warehouse itself to ensure the privacy and confidentiality of the data itself.”

The future vendor must have “extensive expertise as an honest data broker,” with specific experience enabling sharing of and collaboration around clinical and research data. The contractor must also be able to move fast, as NIH expects the honest broker services to be stood up “immediately.”

NIH is expecting a quick turnaround on this contract, with an anticipated period of performance from Aug. 1 through Dec. 31, 2020.

Responses to the RFI are due by 8 a.m. Aug. 3, and should include information on staff expertise; current capabilities; prior work of a similar nature; management and senior level experience; and “examples of prior contracts, grants or other arrangements whereby you provided honest data broker services involving clinical data.”

X
This website uses cookies to enhance user experience and to analyze performance and traffic on our website. We also share information about your use of our site with our social media, advertising and analytics partners. Learn More / Do Not Sell My Personal Information
Accept Cookies
X
Cookie Preferences Cookie List

Do Not Sell My Personal Information

When you visit our website, we store cookies on your browser to collect information. The information collected might relate to you, your preferences or your device, and is mostly used to make the site work as you expect it to and to provide a more personalized web experience. However, you can choose not to allow certain types of cookies, which may impact your experience of the site and the services we are able to offer. Click on the different category headings to find out more and change our default settings according to your preference. You cannot opt-out of our First Party Strictly Necessary Cookies as they are deployed in order to ensure the proper functioning of our website (such as prompting the cookie banner and remembering your settings, to log into your account, to redirect you when you log out, etc.). For more information about the First and Third Party Cookies used please follow this link.

Allow All Cookies

Manage Consent Preferences

Strictly Necessary Cookies - Always Active

We do not allow you to opt-out of our certain cookies, as they are necessary to ensure the proper functioning of our website (such as prompting our cookie banner and remembering your privacy choices) and/or to monitor site performance. These cookies are not used in a way that constitutes a “sale” of your data under the CCPA. You can set your browser to block or alert you about these cookies, but some parts of the site will not work as intended if you do so. You can usually find these settings in the Options or Preferences menu of your browser. Visit www.allaboutcookies.org to learn more.

Sale of Personal Data, Targeting & Social Media Cookies

Under the California Consumer Privacy Act, you have the right to opt-out of the sale of your personal information to third parties. These cookies collect information for analytics and to personalize your experience with targeted ads. You may exercise your right to opt out of the sale of personal information by using this toggle switch. If you opt out we will not be able to offer you personalised ads and will not hand over your personal information to any third parties. Additionally, you may contact our legal department for further clarification about your rights as a California consumer by using this Exercise My Rights link

If you have enabled privacy controls on your browser (such as a plugin), we have to take that as a valid request to opt-out. Therefore we would not be able to track your activity through the web. This may affect our ability to personalize ads according to your preferences.

Targeting cookies may be set through our site by our advertising partners. They may be used by those companies to build a profile of your interests and show you relevant adverts on other sites. They do not store directly personal information, but are based on uniquely identifying your browser and internet device. If you do not allow these cookies, you will experience less targeted advertising.

Social media cookies are set by a range of social media services that we have added to the site to enable you to share our content with your friends and networks. They are capable of tracking your browser across other sites and building up a profile of your interests. This may impact the content and messages you see on other websites you visit. If you do not allow these cookies you may not be able to use or see these sharing tools.

If you want to opt out of all of our lead reports and lists, please submit a privacy request at our Do Not Sell page.

Save Settings
Cookie Preferences Cookie List

Cookie List

A cookie is a small piece of data (text file) that a website – when visited by a user – asks your browser to store on your device in order to remember information about you, such as your language preference or login information. Those cookies are set by us and called first-party cookies. We also use third-party cookies – which are cookies from a domain different than the domain of the website you are visiting – for our advertising and marketing efforts. More specifically, we use cookies and other tracking technologies for the following purposes:

Strictly Necessary Cookies

We do not allow you to opt-out of our certain cookies, as they are necessary to ensure the proper functioning of our website (such as prompting our cookie banner and remembering your privacy choices) and/or to monitor site performance. These cookies are not used in a way that constitutes a “sale” of your data under the CCPA. You can set your browser to block or alert you about these cookies, but some parts of the site will not work as intended if you do so. You can usually find these settings in the Options or Preferences menu of your browser. Visit www.allaboutcookies.org to learn more.

Functional Cookies

We do not allow you to opt-out of our certain cookies, as they are necessary to ensure the proper functioning of our website (such as prompting our cookie banner and remembering your privacy choices) and/or to monitor site performance. These cookies are not used in a way that constitutes a “sale” of your data under the CCPA. You can set your browser to block or alert you about these cookies, but some parts of the site will not work as intended if you do so. You can usually find these settings in the Options or Preferences menu of your browser. Visit www.allaboutcookies.org to learn more.

Performance Cookies

We do not allow you to opt-out of our certain cookies, as they are necessary to ensure the proper functioning of our website (such as prompting our cookie banner and remembering your privacy choices) and/or to monitor site performance. These cookies are not used in a way that constitutes a “sale” of your data under the CCPA. You can set your browser to block or alert you about these cookies, but some parts of the site will not work as intended if you do so. You can usually find these settings in the Options or Preferences menu of your browser. Visit www.allaboutcookies.org to learn more.

Sale of Personal Data

We also use cookies to personalize your experience on our websites, including by determining the most relevant content and advertisements to show you, and to monitor site traffic and performance, so that we may improve our websites and your experience. You may opt out of our use of such cookies (and the associated “sale” of your Personal Information) by using this toggle switch. You will still see some advertising, regardless of your selection. Because we do not track you across different devices, browsers and GEMG properties, your selection will take effect only on this browser, this device and this website.

Social Media Cookies

We also use cookies to personalize your experience on our websites, including by determining the most relevant content and advertisements to show you, and to monitor site traffic and performance, so that we may improve our websites and your experience. You may opt out of our use of such cookies (and the associated “sale” of your Personal Information) by using this toggle switch. You will still see some advertising, regardless of your selection. Because we do not track you across different devices, browsers and GEMG properties, your selection will take effect only on this browser, this device and this website.

Targeting Cookies

We also use cookies to personalize your experience on our websites, including by determining the most relevant content and advertisements to show you, and to monitor site traffic and performance, so that we may improve our websites and your experience. You may opt out of our use of such cookies (and the associated “sale” of your Personal Information) by using this toggle switch. You will still see some advertising, regardless of your selection. Because we do not track you across different devices, browsers and GEMG properties, your selection will take effect only on this browser, this device and this website.