Essays for Partnership With Patients Travel Fund

Today is the deadline for the Patient Travel Fund Submissions for Partnership WIth Patients Summit in DC.  One requirement of submission was to post the essays onto a blog, so I am posting these here:

From Evelyn McKnight

Thank you for the opportunity to apply for a travel scholarship to the upcoming Partnership for Patients Summit. I welcome the chance to attend and participate in the Summit.

Because of my work, starting in 2007, which is centered in patient advocacy with a concentration on prevention of outbreaks of blood-borne pathogens in medical facilities, I believe I am the ideal candidate for a travel scholarship. Thank you in advance for your consideration. 

You ask a couple important questions—what I can offer to the Summit and what the Summit can offer back to me.

Hepatitis Outbreaks’ National Organizations for Reform (HONOReform) Foundation, our national organization based in Nebraska and active on Capitol Hill, has become a “gathering place” for men and women throughout the United States who have been affected by outbreaks of hepatitis C. I hear from these victims frequently. Personally and through HONOReform, I try to do all I can to be helpful. As someone who was infected with hepatitis C while receiving healthcare, I understand. From being there and from watching and helping others, I have developed a good understanding of the process of grieving and getting better. 

Late last year, we added two patient advocates to our board of directors. I am in communication with more than a dozen patient advocates, all of whom urge us to continue working on safeguarding the medical injection practice. In addition to sharing my story and what I’ve learned along the way, I welcome the chance to offer is a connection to the many advocates whom I work alongside…as a way to develop critical mass among all patient advocates. 

Empowerment through thorough messaging is important to a grass roots organization like ours. I have no doubt the PFP Summit will help me in a variety of ways. But comparing notes on messaging and outreach is an area that is on my mind right now. I believe this will be part of what the PFP Summit will offer back to me. I look forward to meeting more advocates and learning how they spread the word—and sharing how HONOReform remains active in this way. 

I am glad to be part of the developing PFP “Patient and Family Engagement Network” and the other groups and committees of which I’m a part. But I am especially interested in being part of the upcoming PFP Summit, and I ask you to please consider me for the travel scholarship. 

In the meantime, I welcome the chance to detail more of my work at HONOReform—the ways I strive to continue to make a difference in preventing healthcare associated infection. 

I would be honored to be included. Thank you for all you do. Please contact me anytime.

Evelyn V. McKnight, President
HONOReform/HONOReform Foundation

evelyn@HONOReform.org
www.HONOReform.org
www.OneandOnlyCampaign.org
www.twitter.com/honoreform
Facebook: HONOReform
www.ANeverEvent.com

Working to ensure that every medical injection is a safe one

The second essay is from Winnie Tobin:

I am writing to request a travel scholarship for the Partnership with Patients Summit in Kansas City.  I have been the Communications Director at MITSS (Medically Induced Trauma Support Services) for the past 9 years.  MITSS is a non-profit headquartered just outside of Boston, Massachusetts, whose mission is to Support Healing and Restore Hope to patients, families, and clinicians who have been impacted by errors and adverse medical events.  I am also a family member who has stood by helplessly as a loved one required two brain surgeries due to a preventable surgical site infection and an inaccurate lab report.

I came into the patient safety and quality arena quite by chance back in 2003 when I met Linda Kenney.  At the time, Linda was just starting MITSS, and a mutual friend suggested that in my “free time,” I could help Linda “stuff some envelopes.”  My children were transitioning to middle school, and I was pondering my next steps, unsure about what the future would hold.  I had majored in business/marketing in college and worked in the legal field for 10+ years, but now I was at home raising my two sons.   Linda’s story of a near fatal anesthesia block resonated with me on a profound level, and, personally, we connected immediately.  The rest, as they say, is history.

These past nine years have been an extraordinary journey, though not always easy.  Many times the barriers seemed impenetrable -- too deeply entrenched in a healthcare system not accustomed to listening to nor incorporating the voice of its patients.  But, with persistence and perseverance, the MITSS message of supporting everyone involved in an adverse event has picked up traction not only locally and nationally, but internationally as well.  It is this firsthand experience -- what has worked well, what didn’t, and how it all unfolded -- that I would bring to the Summit.  I have acquired and sharpened the skills (writing, editing, public speaking, social media, program production, event planning, website development, etc.) that patient advocates need to be effective. 

The most important things, though, that I would bring to the Summit are my ability to listen and eagerness to connect with others working in this space.  I have spoken with hundreds of people who have been injured by adverse events.  I hear their pain, frustration, and isolation on a daily basis.  We are always looking for additional resources to offer our clients, and by attending the Summit, I would hope to expand our network.  I know, too, that there is power in numbers and am excited about coming together to form a collective patient voice.

What I am hoping to gain from attending the Summit is simply to learn, and this would be an extraordinary opportunity for me to do so.

As MITSS strives to provide our services free of charge to our clients, we do not have a travel budget for ourselves.  Therefore, I would need assistance with travel costs in order to attend the Summit.  Thank you.

Winnie Tobin

wtobin@mitss.org

And from Nikolai Kirienko

Why should you be the person who receives the scholarship? 

On a long, and often solitary patient journey, the greatest relief I've found amidst the losses of a relentless chronic illness are the riches of empathy and friendship I've shared with fellow patient voyagers who 'get it'.  (In solidarity with those in the disabled and patient communities who also struggle to afford these events on fixed income, I would like to be considered for this scholarship only if it would otherwise go left unclaimed.)

What can you offer to the people you connect with? 

Living with a chronic illness, and coping with the realities of invisible symptoms and routine daily setbacks can be a lonely and isolating experience.  With thousands of hours of experience navigating the extremes of life in the hospital, I hope I can offer the understanding of someone who has been, and is very much still 'there'; on an epic journey through high cost, high risk chronic care.  The value I hope to offer is the empathy and encouragement of someone who understands, from experience. 

What can they offer you? 

A community of folks committed to the healing possibilities of patient empowerment through expanded digital participation in health is a uniquely supportive environment that I look especially forward to experiencing in Kansas City.  I hope to learn from the advocacy and experience of other patients who have faced overcome many of the same challenges I'm still attempting to master.

What do you hope to do with what you learn?

I hope to improve my ability to communicate, especially around the many issues for which patients must collaborate, if we would like to see our agenda represented, from our clinical appointments to national health IT policy. 

Thank you again for organizing this wonderful event, and for your consideration of this patient travel scholarship to Partnership with Patients.  

Sincerely, 

Nikolai Kirienko