Experienced from both sides of the bed

The November 2011 Issue of Readers Digest reads in big, bold print  “50 Secrets Nurses Won’t Tell You”

Articles like this create fear and mistrust in the patient community.

The front of the article states “Doctors are clueless about what really happens in the beds, rooms and halls of our hospital” Really? In my experience physicians are very well aware of what is happening in the bed. I had just had a major vascular surgery in 2009, when I developed chest pain in the ICU.  Who was there at the side of my bed reading my EKG and ordering the Nitro Drip? The ICU nurse? No the Intensivist.  My nurse was amazing. She monitored my pain, adjusted the drip while monitoring my vital signs. It was a team effort.

The next time I am admitted to the hospital should I be suspicious of my vascular surgeon who held my hand and informed me how my surgery went? He drew pictures so I understood and patiently listened to me while I asked questions about my prognosis. What about the fact that the surgeon listened to my suggestions on what I thought could make my recovery successful. Together as a team we made decisions about my discharge. My surgery and all that accompanied it was a positive experience because participatory medicine was taking place.

The Readers Digest states that they “...went to the experts.” Now don’t get me wrong, I have been a Registered Nurse for almost 2 decades, and many nurses are exceptionally intelligent, and dedicated. But I disagree with the light Readers Digest put nurses in. We are part of the team, there are no experts. The doctor nurse relationship is not “them against us” like this article makes it out to be. I am member of The Society of Participatory Medicine who’s mission is to bring together e-patients and health care professionals. We can do better both as health care providers and patients, telling “secrets” is not the answer.

Personally I found a few of the "secrets" offensive and not true of the nursing profession. The article “50 Secrets Nurses Won’t Tell You” is a small representation of nurses, many who are professional and work with values and a code of ethics.
Whatever it takes to sell a magazine right?

I could go delve deeper into this article but I suggest you read the article judge for yourself, let me know your thoughts.

Kari Ulrich,  FMD e-patient, RN
Experienced from both sides of the bed

Getting ready for Surgery

Join FMDChat on Facebook For a Special Chat like no other!

We are doing something a little different in our patient community, and I wanted to share it with all of you.

FMDChat is holding a facebook chat, but instead of doctors telling patients about Fibromuscular Dysplasia (FMD), we are giving patients the opportunity to educate physicians what it is like living with FMD, what our challenges are in health care.

Please join us in our conversation, I hope this is the first of many more to come. I am grateful to the Dr. Sevilla and my husband, Dr. Ulrich for taking this leap of faith and making a difference in our patient community.

Thursday, November 10th from 7-7:30pm CST

Patient voices are an under-utilized resource.

FMDChat wants to raise awareness in the Family Practice Community. Join us and our special guests:

Dr. Mike Sevilla & Dr. Mike Ulrich

As we open lines of communication and educate physicians by communicating through the patient perspective.

This is an opportunity for patients to tell Family Practice Physicians what we need from them!
About our Guests:

Mike Sevilla, MD (@DrMikeSevilla on Twitter) - Family Physician and Social Media Enthusiast since 2005. Topics of his blog and podcast include commentary on current medicine and social media news. To learn more about Dr. Sevilla visit: http://www.familymedicinerocks.com/

Mike Sevilla, MD

Mike Ulrich, MD - Family Physician for Mayo Clinic Health Systems in Albert Lea in Minnesota. Dr. Ulrich is the Division Chair for Family Practice and Medical Director of Emergency Medicine for Mayo Health Systems in Albert Lea, Minnesota. He serves on the Medical Advisory Board for The Joe Niekro Foundation.  He is also husband to FMD patient Kari Ulrich and has a unique perspective on coping with FMD.

Mike Ulrich, MD

Chat Moderated By: Sarah E. Kucharski and Kari Ulrich

5 Influential Patients in Social Media

Kelly Young, Kari Ulrich,Virna Elly at Mayo Clinic Social Media Summit 2011

There is a lot of talk about influential people in health care, many are lists of physicians, health care executives and organizations.  There is another group of that cannot be forgotten. Lets lead a discussion about influential patients. Here are some e-patients that have been most influential to me. Lets add on to this list! Let me know what e-patients are influencing you and why? What qualities makes a patient influential?

Kelly Young  Fighting Rheumatoid Arthritis with humor, wisdom and strength.

Twitter: @rawarrior  http://rawarrior.com/

Virna Elly  Fighting Diabetes with courage, intelligence and squirrels.

Twitter: @VirnaElly http://patientsperspective.org/about/

Laura Haywood-Cory  Fighting Heart Disease with compassion, empathy and determination.

Twitter @ncscadsurvivor  http://a-changeofheart.blogspot.com/

Melissa Travis Fighting Lupus with grace, education and whit.

Twitter: @DrSnit  http://drsnitwithlupus.blogspot.com/

Sarah E. Kucharski  Fighting Fibromuscular Dysplasia with honesty, integrity and wombats.

Twitter: @AfternoonNapper http://afternoonnapsociety.blogspot.com/

Participatory Medicine

During the Mayo Clinic Social Media Residency I had the opportunity to ask Mike Sevilla, MD what he thinks about Participatory Medicine. Here is what he had to say:

Mike Sevilla, MD

Thank you Dr. Sevilla!

I highly recommend every health care provider read:
Participatory Health Care: White Pages by Tom Ferguson, MD and the e-Patient Scholars

E-Patient Communities the Good, the Bad and the Ugly

In the past 5 years I have learned a lot from the available on-line communities… the good, the bad and the ugly. No, I am not talking Clint Eastwood, although he may make an excellent moderator to any online support group.

Lets talk about the good of E- patient communities. They allow patients to connect with others and share their experiences. Communities give us the ability to open up dialogue for education. Patients learn complex medical jargon and treatment options of a given disease. They give support to those who need a listening ear. There are so many positive things about participating in online communities, but with the positives come some negatives. Online communities develop into trusting families. But what happens when there is a breach in the community?

Lets talk about the bad and the ugly of E- Patient Communities. What happens when the community you once trusted with your inner most thoughts and feelings becomes violated? When E-Patients find an online community they usually are at their most vulnerable point. Patients are scared and seeking help from their peers. They are putting their trust into sources that may be unknown. Transparency is so important in the social media world. Many online groups such as Yahoo or Goggle groups may be moderated, but who is behind the moderation? Here are some important questions to ask before joining a group.

• Is the person moderating transparent about who they are?

• What is their role as a moderator?

• Who are the patients in the group?

• Are these patients transparent?

I have seen firsthand how written words can lead to miscommunication and misunderstanding. In the end of these verbal wars it is the patient that suffers. Misguided advice can harm.

When you are sharing so much of your medical history and your personal experience it is understandable that you may want to stay anonymous. But when you are anonymous you are not a credible source. Do not be afraid of being credible. Being a credible e-patient does not mean you are an expert- but it does give your words integrity. However, think carefully about the medical information you divulge, as it becomes public knowledge once on the net.

E-patient communities have an obligation to be safe and transparent.  Over the years I have turned Mayo’s Community Page and most currently Smart Patients. I found them to be safe and reliable resources. It is important for patients to understand how online communities work. I would suggest hanging out and listening and find out if that community is right for you. Online Communities are like families, you laugh and cry together and yes sometimes bicker. They can be a great resource for patients. Don’t be afraid to ask questions. Participate and be an active listener. 

Updated 1/8/2014