Volunteers wanted: Your feedback about Mayo Clinic's COVID Hub

About COVID Hub:
The COVID Hub is a comprehensive online resource for information seekers who want to learn about COVID-19, COVID vaccines, how Mayo Clinic is keeping patients safe for in-person visits and information for Post-COVID Conditions.
https://www.mayoclinic.org/coronavirus-covid-19
We want to improve the COVID Hub.

About the research:
Mayo Clinic would like to gather feedback on your experience with the COVID Hub and understand unmet information needs of people who are looking for information about post-COVID symptoms.

Are you interested in participating in a online interview a Mayo Clinic designer from the Center for Digital Health?

We are looking for 3 volunteers. The interviews will be online on smartphone or desktop for 1-hour and participants will be provided an honorarium for their time.

To be eligible to participate, you must:
– be 18 years old or older
– Mayo Clinic patient or someone who seeks medical information on mayoclinic.org
– actively seeking information about COVID symptoms and long-hauler info
– available for a 1 hour interview on June 24, 25 or 28

If interested, please contact me using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

@rebalancemassage @cilla21 @kcartier @lauriekh, as COVID long-haulers, I'm wondering if you may be interested in helping Mayo Clinic improving our information about COVID recovery on the Mayo Clinic website.

About COVID Hub:
The COVID Hub is a comprehensive online resource for information seekers who want to learn about COVID-19, COVID vaccines, how Mayo Clinic is keeping patients safe for in-person visits and information for Post-COVID Conditions.
https://www.mayoclinic.org/coronavirus-covid-19
We want to improve the COVID Hub.
Mayo Clinic would like to gather feedback on your experience with the COVID Hub and understand unmet information needs of people who are looking for information about post-COVID symptoms.

Are you interested in participating in a online interview a Mayo Clinic designer from the Center for Digital Health?

We are looking for 3 volunteers. The interviews will be online on smartphone or desktop for 1-hour and participants will be provided an honorarium for their time.

To be eligible to participate, you must:
– be 18 years old or older
– Mayo Clinic patient or someone who seeks medical information on Mayo's website at mayoclinic.org
– actively seeking information about COVID symptoms and long-hauler info
– available for a 1 hour interview on June 24, 25 or 28

Please reply if you're interested.
Thanks, Colleen.

REPLY
@colleenyoung

@rebalancemassage @cilla21 @kcartier @lauriekh, as COVID long-haulers, I'm wondering if you may be interested in helping Mayo Clinic improving our information about COVID recovery on the Mayo Clinic website.

About COVID Hub:
The COVID Hub is a comprehensive online resource for information seekers who want to learn about COVID-19, COVID vaccines, how Mayo Clinic is keeping patients safe for in-person visits and information for Post-COVID Conditions.
https://www.mayoclinic.org/coronavirus-covid-19
We want to improve the COVID Hub.
Mayo Clinic would like to gather feedback on your experience with the COVID Hub and understand unmet information needs of people who are looking for information about post-COVID symptoms.

Are you interested in participating in a online interview a Mayo Clinic designer from the Center for Digital Health?

We are looking for 3 volunteers. The interviews will be online on smartphone or desktop for 1-hour and participants will be provided an honorarium for their time.

To be eligible to participate, you must:
– be 18 years old or older
– Mayo Clinic patient or someone who seeks medical information on Mayo's website at mayoclinic.org
– actively seeking information about COVID symptoms and long-hauler info
– available for a 1 hour interview on June 24, 25 or 28

Please reply if you're interested.
Thanks, Colleen.

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Hi Colleen. I'd like to participate.

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@cilla21

Hi Colleen. I'd like to participate.

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Great Cilia. Please check your private messages for more information.

REPLY

I greatly appreciate that Mayo has set up this Covid Hub. I believe that we are not out if this pandemic in our country and certainly around the world. I would ask, however, that side effects of the vaccine that are outside of the usual short term ones, be addressed.

I have posted a number of times on the Covid Vaccine and Neuropathy Discussion. I’ve always advocated for the importance of getting vaccinated. However, it still seems that the medical community continues to ignore those of us who were afflicted with neuropathy, or had our neuropathy increased, after the vaccine.

I realize that this is a small percentage of people compared to the numbers who have been successfully vaccinated. However, I continue to believe that to those of us afflicted with these side effects, that it matters, it’s real, and deserves to be acknowledged and researched. As a liver transplant person, I’m now being told that to develop antibodies to Covid I’ll undoubtedly need a third dose. At this point, not knowing how it will affect my neuropathy I will not get another shot.

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@athenalee

I greatly appreciate that Mayo has set up this Covid Hub. I believe that we are not out if this pandemic in our country and certainly around the world. I would ask, however, that side effects of the vaccine that are outside of the usual short term ones, be addressed.

I have posted a number of times on the Covid Vaccine and Neuropathy Discussion. I’ve always advocated for the importance of getting vaccinated. However, it still seems that the medical community continues to ignore those of us who were afflicted with neuropathy, or had our neuropathy increased, after the vaccine.

I realize that this is a small percentage of people compared to the numbers who have been successfully vaccinated. However, I continue to believe that to those of us afflicted with these side effects, that it matters, it’s real, and deserves to be acknowledged and researched. As a liver transplant person, I’m now being told that to develop antibodies to Covid I’ll undoubtedly need a third dose. At this point, not knowing how it will affect my neuropathy I will not get another shot.

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I truly don't think we are being ignored, but it is more a matter of gathering and interpreting the VAERS data and other post-vaccine reports.

In response to the pandemic, virtually every scientific and medical resource was targeted towards finding a treatment, cure or vaccine for the deadly virus attacking us globally. Remember we just reached 6 months of experience with Covid vaccines, which themselves were developed, tested and deployed in less than a year. We may be a society that expects instant results, but that is not how medical and scientific studies happen.
Studies are now beginning of side effects , antibody levels, duration and the question of what vaccine is best for a specific subset of the population.
At the U of M alone there are at least a dozen studies underway, so globally I would guess they number in the thousands. Data needs to be accumulated, validated, follow up contacts done. Then it is analyzed, reviewed and published. Typical post-studies take a year or more. Also, the thousands vaccinated during the test period are being followed for 2 years to assess long term effects, so those reportswill be coming. .
While we all wish for answers, we also need them to be correct.

You may recall that in early days of Covid, many drugs were touted as cures, with the public clamoring for them or in some cases hoarding them. Then a few months later, their worth was unfounded and the public was angry at being "misled" when scientists issued corrections.

Now, we know from the rapidly declining case rates, hospitalizations and deaths that the vaccines are effective, but it is apparent that some things still need to be fine tuned.

As with all things Covid, stay tuned for further information.

Sue

REPLY
@athenalee

I greatly appreciate that Mayo has set up this Covid Hub. I believe that we are not out if this pandemic in our country and certainly around the world. I would ask, however, that side effects of the vaccine that are outside of the usual short term ones, be addressed.

I have posted a number of times on the Covid Vaccine and Neuropathy Discussion. I’ve always advocated for the importance of getting vaccinated. However, it still seems that the medical community continues to ignore those of us who were afflicted with neuropathy, or had our neuropathy increased, after the vaccine.

I realize that this is a small percentage of people compared to the numbers who have been successfully vaccinated. However, I continue to believe that to those of us afflicted with these side effects, that it matters, it’s real, and deserves to be acknowledged and researched. As a liver transplant person, I’m now being told that to develop antibodies to Covid I’ll undoubtedly need a third dose. At this point, not knowing how it will affect my neuropathy I will not get another shot.

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Hi @athenalee, I have to agree with @sueinmn. Side effects of COVID and side effects of the COVID vaccine are not being ignored by researchers and medical professionals. On the contrary, they are being monitored very closely and data of patient-reported side effects gathered and researched. That is why it is so important to report side effects to VAERS, which I believe you have done. And continue to work with your health care team to manage side effects, especially those that are life-threatening and/or reduce quality of life.

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Thank you to those of you who participated in this feedback gathering. Telling us what post-Covid information is important to you, how it’s affected you and how the website can support people who are also interested in this information will help bring the relevant and timely information to others. We appreciate the candid feedback to improve the web experience.

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