#KeepingPatientsFirst

 

Welcome to the #KeepingPatientsFirst!

Real-Time Information on COVID-19 for Patients and Physicians!

#KeepingPatientsFirst is a unique, real-world study that will help us better understand the COVID-19 illness, how people are affected by the virus, how the disease progresses, and how people respond to treatments that are provided. Your participation in this online study will help doctors and researchers learn more about the novel Coronavirus and COVID-19, while providing real-time information to physicians and patients in order to support effective treatment decisions and help identify promising new treatments for COVID-19.

It’s easy to participate, and you’ll be helping the medical community advance knowledge and more effectively treat this devastating disease. Simply sign up and tell us about your experiences with COVID-19, or access this site for the latest information in real time. There is no fee for patients or physicians to use the platform or receive the results. 

To access #KeepingPatientsFirst, please visit the following links:

For Patients

For Physicians

Thank you for your interest in this unique and important program! Your time and input will make a difference in this pandemic!

Questions and Answers about #KeepingPatientsFirst:

What is the #KeepingPatientsFirst platform?

The #KeepingPatientsFirst platform is an integrated, Real-World Evidence (RWE) research platform developed by Parexel, a leading clinical research organization (CRO), and powered by Microsoft cloud technology that allows for the collection and analysis of data directly from patients and healthcare professionals. The platform provides patients and physicians a single source for rapid access to pooled, real-time data and analyses on the COVID-19 illness and about multiple COVID-19 therapies being developed or currently in use. It is our goal to provide the latest information to physicians to help them make individualized treatment decisions and accelerate the identification of promising therapies.   

What is the benefit of the platform?

The goal is to support the development of promising therapies to treat and prevent COVID-19 by gathering both patient and physician information on their recent experiences with the illness. Data will be appropriately key-coded and/or de-identified to address privacy concerns. These data will then be analyzed and presented online for patients and physicians to view throughout the study, providing insights into the evolution of the illness and patient outcomes.  Researchers and scientists will also be able to access these data to better understand and characterize the real-world patient journey—from testing to diagnosis to disease resolution. 

Who can use the platform?

All eligible patients and physicians, regardless of whether they have COVID-19, are invited to share data on the #KeepingPatientsFirst platform. Patients must be 18 years or older and residents of the U.S. Physicians within the U.S. can use the platform, should their patient develop COVID-19 illness and receive treatment. 

What is the process for getting involved in #KeepingPatientsFirst?

Patients:
It’s free to participate, easy to sign up, and it only takes 10 minutes of your time per week. Simply enroll online and then answer questions via a mobile device/smart phone, tablet or computer. Our goal is to collect your responses weekly for up to one year in order to better understand your experiences and provide critical input for physicians on how to best treat patients with COVID-19. Patients can also allow their physician to enter additional data on their behalf by providing their physician with a unique invitation code.

Physicians:
Physicians can enroll online here. After entering your patient’s unique invitation code, you can provide additional data about your patient’s treatment by completing an introductory survey and  a single follow-up survey. All patient information will be kept confidential in accordance with HIPPA and other applicable privacy laws.

What personal information is collected? 

The information you provide will be held in strict confidence and will only be used to help us understand how COVID-19 affects people of different ages, races, genders and risk factors. Your information will not be shared with external parties.

Individuals will be asked to provide:

Personal contact details so we can communicate with you about the study. All personal information will be encrypted to maintain confidentiality and will only be accessed by Parexel

  • Demographic information related to age and race  
  • Coronavirus test dates and results (if any)  
  • Brief medical history 
  • Medications (if any) taken for the treatment of COVID-19 or other relevant conditions 
  • Details related to the course of illness, including symptoms, treatments, and outcomes 
  • Any hospitalization for the treatment of COVID-19, details related to the hospitalization and outcome
  • Patient perceptions of the pandemic

How are patient data being stored and protected? 


The protection and privacy of patient data is our top priority. All data received will be encrypted and then de-identified or key-coded to protect patient privacy according to applicable laws and regulations. Contact information such as your name, email address, and mobile number will be used only for communication about the study and will not be shared outside of those personnel engaged by Parexel for this study. All contact information will be stored separately from demographic and healthcare information. Demographic and healthcare information will be held in a key-coded or pseudonymized format and will only be used for analysis of this and other approved research studies. 

Who is funding this study?

Parexel International Corporation, an independent Clinical Research Organization, is funding this study.

How do I remove myself from the study?

You can opt out at any time from within the app and we will stop reminding you to submit surveys. If you would like us to delete your contact details, you may withdraw consent by emailing your request to covid19patient@parexel.com

How can I learn about broader results and trends reported in the platform?

Patients and physicians will have access to the latest insights  on the study website. Additionally, participating physicians may submit analytic and publication concepts to the study for review and consideration. If approved by Parexel, these analyses can be carried forward by Parexel to develop further insights and findings from this important study.

Who can see the data I enter? 

All study data entered by participants will be de-identified through “tokenization” and aggregated for analysis. The tokenization method assigns a unique code (a “token”) to a participant’s data to obscure that person’s personal information in a given data set, and then uses that token to combine those data with data from other datasets that have been similarly tokenized. Your individual data will not be visible or accessible to any third party. 

Who should I contact if I have questions?

Any questions about the study, your rights as a participant, or issues regarding the study may be emailed to covid19patient@parexel.com or covid19physician@parexel.com. Please do not put sensitive medical or personal information into your email correspondence.

We are always available for a conversation.

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We are always available for a conversation.

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