Webinars

How Mayo Clinic’s Patient Community Changes Health Care and Advances Science

Thu, Jan 17, 2019
2:00pm to 3:00pm CT

Description

Patient online communities not only reduce isolation and anxiety when faced with a life-changing diagnosis, they can also improve health outcomes. As Community Director of Mayo Clinic Connect, Colleen Young wanted to do more than connect patients. She involved the Mayo Clinic enterprise: providers, managers, communications specialists, researchers, and frontline staff; demonstrating how they can learn from and engage with the patient community to:

  • Improve health care and service delivery
  • Discover champions
  • Increase brand loyalty
  • Educate health care providers
  • Co-create patient education
  • Change poor health behaviors
  • Advance science

You’ll learn how you can excite internal stakeholders up, down, and across your organization to recognize the value of the community and understand how they can harness it to help them do their work better. Thriving communities get stuff done.

Link to the presentation slides on SlideShare.

About Colleen Young Young

Colleen Young is the Community Director of Mayo Clinic Connect, a virtual community connecting patients with each other and to Mayo Clinic medical expertise. As an internationally recognized expert in building online patient communities that thrive, she frequently speaks about communicating the experience of illness in the digital age and the social web’s impact on participatory medicine, including at Stanford Medicine X and Mayo's Health Care Summit in Australia #MayoInOz. Colleen is a “tenacious connector of patients."

Location

Online

Questions? Contact:

socialmediacenter@mayo.edu

It would be very helpful for those of us with hearing problems if this had CC.
I guess I had things confused, I thought this was at 4:00 EST but it appears as if it was already recorded so I will return later. It definitely looks worthwhile.

@pamressler

Wonderful webinar @colleenyoung @LeeAase @DanHinmon one of my key takeaways: creating a safe space and welcoming both conversations of successes and failures/challenges. Thanks for sharing your wisdom

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Thanks @pamressler. It is vital to make space for people to talk about the unmentionables, vulnerabilities, and setbacks without fear of judgement of fellow members. It is a prime objective of Connect.

@contentandwell

It would be very helpful for those of us with hearing problems if this had CC.
I guess I had things confused, I thought this was at 4:00 EST but it appears as if it was already recorded so I will return later. It definitely looks worthwhile.

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You and @merpreb mentioned closed captioning, @contentandwell. Such a good suggestion. Thank you both.

@womenofteal

@colleenyoung Do you have a sense of when people join? At initial diagnosis, during treatment or when treatment ends?

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So glad you could make the webinar @womenofteal. I'd love to compare experiences with what you see on your very successful community. We don't collect journey stage specifically on Connect unless members mention it in discussion. But, like most communities, we see people join at diagnosis and later stages, like during treatment and when treatment ends. Many clinicians and front line staff, including volunteers, at Mayo Clinic tell patients and caregivers about Connect at time of diagnosis. For that we are grateful. We plan to conduct a study about not only when but how online community is introduced and received in a clinical setting. This will gives us a better idea of when and how it works best for patients and caregivers, and will help all online community managers.

@lzipperer

Thanks to @colleenyoung and @mayoclinic for sharing your experiences today! can you share the citations of the articles that discuss this project

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@lzipperer, ohhh I love the descriptor "Cybrarian". I've posted a link to the slides.

Additionally, here are a few of the resources I shared during the webinar or I think would be interesting further reading:

1. Young C, Community Management That Works: How to Build and Sustain a Thriving Online Health Community, J Med Internet Res 2013;15(6):e119 https://www.jmir.org/2013/6/e119/

2. About Connect https://connect.mayoclinic.org/page/about-connect/tab/aboutconnect/

3. How Moderate and Keep the Community Safe https://socialmedia.mayoclinic.org/2018/09/13/dont-let-these-3-common-fears-stop-you-from-creating-a-vibrant-patient-community/

4. Volunteer Mentors: The Secret Ingredient for Success of an Online Community https://socialmedia.mayoclinic.org/wpblogpost/volunteer-mentors-secret-ingredient-for-success-of-an-online-community/

5. Shifting the “Privacy Calculus” for the Patients Online https://socialmedia.mayoclinic.org/2019/01/15/shifting-the-privacy-calculus-for-the-patients-online/

6. Millington R. The Indispensable Community: Why Some Brand Communities Thrive When Others Perish. September 13, 2018

7. Kotsenas, Amy L. et al. The Strategic Imperative for the Use of Social Media in Health Care. Journal of the American College of Radiology , Volume 15 , Issue 1 , 155 – 161

8. Kotsenas, Amy L. et al. The Social Media DNA of Mayo Clinic—and Health Care. Journal of the American College of Radiology , Volume 15 , Issue 1 , 162 – 166

Let me know if there is something else you want.

@sarahdebord

How do Facebook communities like Colontown.org and mobile apps like Belong.life compare and contrast?

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@sarahdebord, did I answer question fully during the webinar. Let me know if you have followup questions.

@merpreb

@briguyblock– I might be overstepping my boundaries or sticking my nose where it doesn't belong here,but when you mention patient portals the hairs on my neck raise up. So I'm sorry if this post is off the mark.
Patient portals are a big fat failure in America for any type of communications between doctors and doctors, patient and doctors, and patient to patient. Originally it might have been the hope that they would work like the European chip- where doctors could link into a patient's profile and history so that the best possible treatment is given, no matter where they were. PHI didn't seem to be the problem that it is here.
But in America they aren't set up this way. It seems that each hospital and dpctor's office has a different server and are incompatible with all the others. I live in Rhode Island. If I needed treatment at Kent County Hospital, twenty minutes away vs my local hospital at South County Hospital no doctor at Kent County would be able to see my history. To me it was the insurance companies who most benefited by these, not patients and certainly not doctors.

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@merpreb I am not sure how the insurance companies benefit, but you are right about each hospital having different portals. There are some hospitals that are "partners" and are on the same hospital. I do like that on the portal here I can go back and see information and I can check on appointments scheduled.

These days all of the PCPs are actually employed by the hospitals, there are no private practices anymore. I see the day when there will patients will not even have a physician that they go to regularly. All of the information is on the portal so the patient will just go to a central location and see whichever doctor is available. I miss the days when doctors had their own practices. Now if you have to go to a hospital for care your physician does not see you at all, you see a series of doctors of whom you have never heard. Really, if you are sick do you want to see the physician you have developed a relationship or a stream of strangers?
JK

@lzipperer

Love the idea of explicitly translating patient experience and knowledge into brochures!

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@lzipperer, my background is in patient education (oncology). Moderating online patient communities completely transformed my writing approach. It seems normal now but a decade or more ago, patient education was gleaned from clinicians and focused on what the patient needed to know. It has been a huge paradigm shift to include experience expertise into patient education materials and to include what patients WANT to know.

@merpreb

Hi John-That's wonderful John. MGH is like that too. But the patient portal is just for personal histories. I love my doctors and care. But everyone I think can learn a lesson form Mayo!

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@merpreb I'm confused. I can't think of anything that is not on the MGH portal that I need. What do you mean it is only personal histories?
JK

@sasanof

@colleenyoung any examples of OPCs influencing new models of care or redesign of Mayo healthcare delivery?

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Examples are works in progress, @sasanof. We will certainly be sharing the results when studies are completed. The Epilepsy Monitoring Unit is a great example of how we were able to inform the nurses understanding of the patient experience and change how they respond to patients and their families when under observation – more empathy and more control to the patient and families. The project from conception to completion was done in 2 weeks.

@moniquet

Hello everyone,

At Mass General, we have a patient portal called Patient Gateway. Like @merpreb mentioned you can see your personal histories, test results, appointments and billing information. You can also communicate with your care team like John mentioned. There is also an app which is very helpful as a patient.

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@moniquet I am happy also with what is available on the MGH portal. Unfortunately, though some doctors do not read the messages apparently. My husband sent a question to a doctor he was seeing and checked back numerous times. It had never been read. That has not happened to me and I have quite a few doctors at MGH.
JK

@epatientdave

Does Mayo ever let anyone anywhere see any of the data about patients?

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Hey @epatientdave, thanks for answering questions along the way!
Mayo Clinic Connect is a public forum. As such, anyone can read the conversations. However, we do not aggregate, share or sell data about members to third parties. Period. Mayo Clinic does not use member data without member consent.

I describe further here: https://socialmedia.mayoclinic.org/2019/01/15/shifting-the-privacy-calculus-for-the-patients-online/

@contentandwell

@moniquet I am happy also with what is available on the MGH portal. Unfortunately, though some doctors do not read the messages apparently. My husband sent a question to a doctor he was seeing and checked back numerous times. It had never been read. That has not happened to me and I have quite a few doctors at MGH.
JK

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JK- I tried to find something on Patient Portal that was similar to Mayo Connect but there wasn't anything. I'm very surprised. And disappointed. The experience that your husband had with sending a question to his doctor on PP is one of the reasons that I use email and or call.

@contentandwell

@merpreb I'm confused. I can't think of anything that is not on the MGH portal that I need. What do you mean it is only personal histories?
JK

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I shouldn't have said it that way. I was hoping that MGH would have something like Mayo Connect or some form of patient to patient help but every call I made that looked like it might be something of interest was a dead end, outdated, or not available. I love MGH, don't get me wrong. I've been a patient since 2007. My life has been saved many times, and made a hell of a lot better because of them.

@contentandwell

@merpreb I am not sure how the insurance companies benefit, but you are right about each hospital having different portals. There are some hospitals that are "partners" and are on the same hospital. I do like that on the portal here I can go back and see information and I can check on appointments scheduled.

These days all of the PCPs are actually employed by the hospitals, there are no private practices anymore. I see the day when there will patients will not even have a physician that they go to regularly. All of the information is on the portal so the patient will just go to a central location and see whichever doctor is available. I miss the days when doctors had their own practices. Now if you have to go to a hospital for care your physician does not see you at all, you see a series of doctors of whom you have never heard. Really, if you are sick do you want to see the physician you have developed a relationship or a stream of strangers?
JK

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JK- I know! My Pulmonologist just retired because our local hospital could come to an agreement with her. They don't know it yet but they lost one of the most incredible doctors on their staff.
I do not see a team, although I have one. When my appointment is for a surgeon, radiologist or oncologist I see the doctors, at MGH. And my pcp gives me more than 15 min.

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