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Patients and caregivers are “Experts by Experience”
Just Want to Talk | Last Active: Sep 8, 2018 | Replies (38)Comment receiving replies
Hello @collenyoung, This is the very post which appeared on Inspire by Brian,CEO of Inspire, that brought me to Mayo Connect.
The teaming up of Mayo Clinic and Inspire and the launching of "Experts by Experience" thrills me. I always heard Mayo Clinic was one of the top hospitals, if not THE TOP, in the USA. Now with the best hospital and the world's largest online network of support groups teaming up together should bring an amazing outcome for patients as well as medical professionals to obtain the very best patient care that can be provided.
I've been with Inspire for 5 years and so far, it's the only network I've found where members can join multiple groups and write a post which can be shared to multiple groups. Many patients have multiple issues so it makes sense to have multiple groups in one network. However, there are many great groups and online sites.
Mayo Clinic, so far, has the best online network of support groups of any hospital site I've ran across.
I've heard good things about some of the northern hospitals which some supply their patients upon discharge a list of possible online as well as local support groups for them to join. In the New Orleans area, so far, don't know of any hospital that provides patients with online support groups.
In some cases, I'm sure there are some local hospitals that do provide support groups which have meetings to attend.
Wishing for the Best for Everyone
Replies to "Hello @collenyoung, This is the very post which appeared on Inspire by Brian,CEO of Inspire, that..."
Hello @colleenyoung, I'm keeping up with each month's story on "Experts by Experience" which I find very interesting.
Thanks for the kind words in regards to my feelings about Mayo Connect. I think you, staff, and the volunteers are doing an outstanding job in providing a reasonably quick response as well as some very interesting topics of their own.
You seem to have the ability to ask the right questions to get members to talk more than perhaps they would have if not asked your questions. It seems to bring out the best in members which reflects on the great work of your Connect team.
Hello @colleenyoung, I'm glad that Connect has different support groups for many diseases and conditions. I think you would find that if members could share a particular post or comment to multiple groups that members would use it very wisely and with a great appreciation for the ability to gain insight from various groups.
On Inspire, I find that most members are very respectful of other groups and to their members. Caregivers for instance may also join and share their posts or comments to whatever group or groups that could help in regards to their patient's medical conditions.
A good example is with feeding tubes. With over 200 reasons a patient could be on a feeding tube from, auto accident, radiation to the neck or digestive track, ALS, Alzheimer's, Parkinson"s, stroke, etc. their is always a reason for a caregiver's patient or loved one to be placed on some form of alternative nutrition. So it only makes sense to belong to multiple groups.
Oley Foundation - Inspire is the main feeding tube and TPN site within Inspire.
Other groups I run across who also belong to Inspire's Oley site are;
AGMD GI Motility Disorders,
ALS
Caregivers
Cerebral Palsy
Digestive systems Disorder
Ehlers-Danlos Syndrome
G-PACT Gastroparesis and CIP
Head and Neck Cancer
Ostomy Support
Preemie Support
Short Bowel Syndrome
and others from to time. In most cases with feeding tubes few medical staff warn patients about NOT tucking a long dangling tube in their waistband or stabilizing a tube to restrict any pulling on the hole through the skin (stoma). If a tube is allowed to pull in any direction on the stoma for any length of time then the stoma starts to become oblong (egg shaped). Everyone can imagine that a round tube would not fit very snug in an egg shaped hole. This results in stomach juices containing stomach acid to leak out of the hole (stoma) and eat away at the skin. By all the members of the various groups being able to share between groups gives thousands who need this valuable information to receive it.
Seems in many cases heart and lung diseases can also go hand in hand.
Inspire uses two methods of posting. One is under 'Discussions" which only allows members to post in 1 group at a time regardless of how many groups they belong to. The other way of posting is under "Journals" which allows members to post in multiple groups IF they belong to more than 1 group. I think Inspire could improve the way new members attempt to navigate through Inspire's vast network if they would simply explain in some small way the differences between "Discussions" and "Journals."
It took me over a year before I finally asked a friend how to post in multiple groups.
This is getting long so I'll end this part here.
Hope This Helps
Thank you for these feedback, Duvie! I agree that given such a tool, it would be used wisely by members. I'll work with our designers to see how to make this be a simple user experience. I can imagine choosing from a list of over 50 groups would be a nightmare.
The feeding tube example you gave is a good one. I found the same thing for ostomy. The following discussion can be found in Digestive Health, Caregivers, Colorectal Cancer, and Kidney & Bladder group to help ostomates connect.
- Ostomy: Adapting to life after colostomy, ileostomy or urostomy https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/
I have adding the feeding tube discussion that you started (https://connect.mayoclinic.org/discussion-manage/anyone-caring-for-a-feeding-tube-patient/) to the following groups:
Digestive Health
Ear, Nose & Throat
Head & Neck Cancer
Parkinson's Disease
Stroke & Cerebrovascular Diseases
Would you suggest any others? https://connect.mayoclinic.org/groups/
Connect
Hi @duvie It is always interesting to hear how people learn about Mayo Clinic Connect. I'm thrilled to hear that you discovered Connect through our recent collaboration with Inspire highlighting stories of Experts by Experience. Here is this month's story from Gil about living with Multiple Sclerosis.
- Multiple Sclerosis, Illusions, and “Working Understandings” – Experts by Experience https://socialmedia.mayoclinic.org/2018/03/02/multiple-sclerosis-illusions-and-working-understandings-experts-by-experience/
Thank you for your lovely comments about Connect. We are pleased with the compassionate and respectful support and high quality of information exchange that takes place here. The collective knowledge of patients and caregivers is so valuable.
Like Inspire, members of Connect can join as many groups as they like. We recently added the ability to post the same discussion to multiple groups. Currently this functionality is only available to the moderators as we are in the testing phase. How do you see it being used wisely on Inspire? What might you advise us in order to make this functionality easy to use for members?