Patients and caregivers are “Experts by Experience”

Dear members,
Today we’re excited to announce that Mayo Clinic and Inspire have launched “Experts by Experience” – monthly articles written by patients and caregivers from around the world.

The kickoff article is Kindness at the Margins for Caregivers by caregiver Renata Louwers.

Everyone has a story to tell. As you know firsthand, sharing experiences helps build hope and connections. “We have long believed that patient and caregiver stories have considerable power to not just improve their own health care experience, but to improve health care overall,” says Farris Timimi, M.D., a Mayo Clinic cardiologist and medical director for the Mayo Clinic Social Media Network, a collaborative learning community and resources for advancing the use of social media in health.

Experts by Experience articles will appear monthly in communities here on Mayo Clinic Connect, Inspire.com, and for professionals on the Mayo Clinic Social Media Network. Read more about Experts by Experience in today’s press release.

Please feel free to share the articles with your online and offline networks. If you have feedback on the series, please contact me using this form.

Staying connected,
Colleen
Community Director, Mayo Clinic Connect

@lioness

Hi Colleen I decided to write my story on Coronary Artery Disease here ,not sure this is the right format Lionessthekind

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Thanks Colleen

Hello- I would love to submit a story about guilt, shame and opinions when "you" have cancer.

Sounds interesting @merpreb

I have a post on my blog that deals with this exactly

@alpaca

Sounds interesting @merpreb

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Do you want me to send it anywhere?

@alpaca

Sounds interesting @merpreb

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@merpreb, If you look at Colleen's message on top of this page, you can find a live link to a form to contact her. It is blue and at the end of her message.
Rosemary

Liked by curlysunflowers

@alpaca

Sounds interesting @merpreb

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Thank you- I've sent in the form!!

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

I like the multiple group aspect too. People with serious health concerns can empathize with each other across the spectrum of diseases.

@duvie

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

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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?

@duvie

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

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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.

Liked by Jamie Olson

@duvie

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

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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

I was told that new stories wont be accepted until later this year because you have already a full calender

@merpreb

I was told that new stories wont be accepted until later this year because you have already a full calender

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That's correct, @merpreb. The publishing calendar for Experts by Experience is full until October 2018 at the moment.

For the next round of stories, we are looking for stories that might help health care communication professionals in their interactions with and for patients. Health care communication specialists have a multi-faceted job. They are often the people who help write and share patient stories with the public, media and with physicians and hospital staff. What should communication specialists know when working with patients to help tell their stories in meaningful ways — ways that help improve health care? What is the patient's perspective when having their story shared on social media, in the news and on the homepage of a hospital's website?

@duvie

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

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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/

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