Principles of Working With Patients and Caregivers in Research


Involving patients and caregivers in research means working with them as experts who actively participate as part of a multidisciplinary team at all stages of the research process.  This means that researchers need to consider how to include patients and caregivers in new roles.  Though it may seem challenging to involve patients and caregivers at a higher level of engagement, working with them while keeping the following principles in mind can truly transform research.

With Patients

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Feedback Request: Personal Data Tracking and Patients With Multiple Chronic Conditions


As part of our endeavors to engage patients and caregivers in research, we’re posting links to specific articles and asking for your feedback!

Below you’ll find the abstract and link to an article in the Journal of Medical Internet Research (JMIR) entitled “You Get Reminded You’re a Sick Person”: Personal Data Tracking and Patients With Multiple Chronic Conditions.

Make sure you are registered with The Research Loop.  Then go read the article and make notes.  Once you’ve read it, come back and submit your feedback.

You can find other feedback requests here.  

We can’t wait to hear your thoughts!

Abstract:

“You Get Reminded You’re a Sick Person”:
Personal Data Tracking and Patients With Multiple Chronic Conditions

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Patient & Caregiver Feedback Impacting Research Design, Data, and Dissemination


Patients and caregivers can impact research quality throughout the research process including research design, looking at the data, and dissemination of research.  Below we discuss the various ways they can have an impact in each area and how The Research Loop can help make that happen.

Design

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Feedback Request: Precision Medicine: Genomic Profiles to Individualize Therapy


As part of our endeavors to engage patients and caregivers in research, we’re posting links to specific articles and asking for your feedback!  This post is in concert with the
Health Tech Reads (#HTReads) tweetchat to be held on Tuesday, August 29, 2017 at 9:30pm EST.  You do not need to take part in the tweetchat to submit feedback but we hope you will.  And for a primer on tweetchats, make sure to check in on our blog from the #IrishMed tweetchat.

Below you’ll find the abstract and link to an article in Otolaryngologic Clinics of North America entitled Precision Medicine: Genomic Profiles to Individualize Therapy.

Make sure you are registered with The Research Loop.  Then go read the article and make notes.  Once you’ve read it, come back and submit your feedback.

You can find other feedback requests here.

We can’t wait to hear your thoughts!

Abstract:

Precision Medicine: Genomic Profiles to Individualize Therapy

Continue reading Feedback Request: Precision Medicine: Genomic Profiles to Individualize Therapy