Feedback Request: The invisible work of personal health information management


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 is the second in our series of request.

Below you’ll find the abstract and link to an article in the Journal of Medical Internet Research (JMIR) entitled The invisible work of personal health information management among people with multiple chronic conditions: qualitative interview study among patients and providers. 

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:

The invisible work of personal health information management among people with multiple chronic conditions: qualitative interview study among patients and providers.

Continue reading Feedback Request: The invisible work of personal health information management

Patients and Caregivers in Priority Setting


Good research starts with setting good priorities and almost two decades of examples prove that patients and caregivers can help in that process.  There is often a mismatch between priorities set by researchers and what matters to patients and caregivers.  But by including them, patients and caregivers can play a key role in identifying which research questions may be most important and relevant for researchers to pursue. 
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Feedback Request: Patient Demands and Requests for Cancer Tests and Treatments in JAMA Oncology


While The Research Loop is primarily designed for patients and caregivers who have read research they found on their own to provide feedback on the articles they read, we want to start trying to share articles that may be ripe for feedback.  Any articles we share will be open access or accessible via a free registration.

We’re sending out our first feedback request by asking patients and caregivers to submit feedback on an article in JAMA Oncology entitled Patient Demands and Requests for Cancer Tests and Treatments (abstract below).

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.

We can’t wait to hear your thoughts!

Continue reading Feedback Request: Patient Demands and Requests for Cancer Tests and Treatments in JAMA Oncology

Why We Need to Give Patients and Caregivers a Way to Be Involved in Research Virtually


Patients and caregivers can have an impact on research but they need a platform to do so.  Currently, most opportunities for patients and caregivers to get involved in research require patients to contribute in person.  These opportunities may include sitting on a panel to discuss priority setting, contributing to a focus group to review study materials, or traveling to meetings to review research grant applications.  Unfortunately, barriers to participation inherent in these in-person formats can mean that patients and caregivers do not get a voice in research.  Giving patients and caregivers a way to be involved in research virtually can overcome these barriers and add new voices to research.people circle

Continue reading Why We Need to Give Patients and Caregivers a Way to Be Involved in Research Virtually

#IrishMed Tweetchat – Patients and Caregivers Involvement in Research


The Research Loop made made its first tweetchat debut on #IrishMed last Wednesday, July 12, 2017.  Dr. Liam Farrell from Ireland founded and moderates this tweetchat every Wednesday at 10pm BST and 5pm EST, bringing together an international group of patients, caregivers, providers, researchers, and many more to discuss a range of healthcare topics.  For this tweetchat, Liam was kind enough to have me as the co-host to talk about patient and caregiver involvement in research.

Continue reading #IrishMed Tweetchat – Patients and Caregivers Involvement in Research