The nature of disease is changing. With a rise in chronic health conditions it is more important than ever that patients and their families are engaged in their care.
This is done by building a collaborative learning network that brings together patients, families, researchers, and clinicians. When everyone works together and shares their ideas we can learn faster. A collaborative care network builds a systems for that sharing to happen.
There are now examples of this being put into action. One is ImproveCareNow. You can learn more at the video below.
ImproveCareNow isn’t the only group that is working to learn more about the impact on patient and family engagement on health outcomes. The Patient-Centered Outcomes Research Institute(PCORI) was, “established to fund research that can help patients and those who care for them make better-informed decisions about the healthcare choices they face every day, guided by those who will use that information.”.
On PCORI’s website you can learn more about the value of patient and family engagement and explore the academic literature on the impact of patient and family engagement. Click on their logo below to learn more!
So you may be wondering, “What is patient and family engagement?”. That’s a good question. In 2014 their was an article published that talks about the importance of engagement in learning health systems. That article defines engagement as, “the extent to which an individual takes part in the production of information, knowledge,and know-how. Engagement applies to clinicians and researchers,as well as to patients and their families.” (Seid M, Margolis PA, Opipari-Arrigan L. Engagement, Peer Production, and the Learning Healthcare System. JAMA Pediatr. 2014;168(3):201–202. doi:10.1001/jamapediatrics.2013.5063)
It’s when different actors in a health system are involved in producing and sharing knowledge!
There is so much research going on about this subject. As I mentioned earlier, PCORI has an extensive library of research on this subject(PCORI Patient and Family Research).Three of the researchers who have published frequently on the topic of learning networks, patient and family engagement, and the spread of information work at Cincinnati Children’s Hospital. They are listed below and if you click on their bios and scroll down you can browse a list of their publications.
- Dr. Peter Margolis – Bio and publications
- Dr. David Hartley- Bio and publications
- Dr. Michael Seid- Bio and publications
It’s not a mistake that all three are from Cincinnati Children’s. Cincinnati Children’s Hospital is one of the leaders in developing and spreading learning health systems that apply patient and family engagement. The James A. Anderson Center for Health System Excellence have 9 active learning networks that work with 286 pediatric care organizations. You can learn more about those networks on their web page Anderson Center for Health System Excellence
ImproveCareNow is the organization featured in the video at the top of this page. They are also one of the learning networks at the Anderson Center. As one of the leaders in learning more about patient and family engagement they have a number of resources that can help you see first hand what patient and family engagement means and learn more about how it is put into practice.
- ImproveCareNow’s LOOP blog features stories of successes, of patient and families, and how they are learning and improving healthcare together. Find the LOOP Blog here
- They also hold a learning session twice a year and post videos from their past learning sessions online.
- You can attend their upcoming learning session(10/23) online. To learn more follow the link….2019 Fall Virtual Community Conference
- Their past training and videos can be found at the link below. If you scroll down you can find the Virtual Community Conference videos since 2017 and their 2018 Community Engagement Learning Series. ImproveCareNow Videos