Cancelled: NYC Pediatric and Young Adult (18-30) Workshop: Sunday 6/5/2011

[Meinuk]

This Event have been cancelled/postponed.  Please see post below.

The Kidney & Urology Foundation of America’s second patient and family support, learning and networking workshop for pediatric, adolescent and young adult (aged 18-30) CKD4 & 5 and Transplant patients and their families.

TLC2: Together We Learn and Connect will take place on Sunday, June 5, 2011 at The Learning Center (TLC) @ Con Edison, 43-82 Vernon Boulevard in Long Island City, Queens, NY.

Who should attend:  Young adult patients (aged 18-30) and families of pediatric and teen patients to attend.  There will be planned activities for school-aged children (5 and older). Parking at Con Edison is free and KUFA has arranged for limited shuttle service for attendees from the 23rd Street/Ely Avenue Station - E & M trains to the Con Edison facility.

TLC2 will offer two tracks: one for parents and caregivers of the pediatric and teen population and a second targeting the young adult renal and transplant population. 

Patients and families will benefit from the networking opportunities, from talks by noted experts in nephrology and transplantation, the roundtable support sessions lead by medical and mental health experts and the opportunity to gather factual information from government, disease-specific and other groups.


For details and online registration, please visit: http://tlc.kidneyurology.org/

Space is limited and early registration is recommended.  There is a small fee (5.00 capped at $20.00 for families).

We believe, the support, learning, and networking opportunities at this event will benefit all our patients and their families.  Thank you, in advance, for helping to make TLC2 a success.

[okarol]

 
Thanks Meinuk!

[Meinuk]

May, 24, 2003

The event listed above was cancelled/postponed, simply because people didn't sign up.

I was on the planning committee for this event.  There were many enthusiastic people on board, and now these enthusiastic people are simply wondering why?

I know that most of the people on IHD aren't in the greater NY area, but it would help If you could reply with some ideas as to why people don't sign up for events like this.  (The last one that they held was in 2008, and it was a great success)

There are over 12,000 people on dialysis in the greater NYC area (almost 26,000 in NY State).  A significant percentage is under 30.  This event was tailored to them.

Is it just too much for people on dialysis and their families to get out on a Sunday?  What would be the best way to support young adults?  Is running programs like this not the way to do it?

What are your thoughts?  I am very curious, and will share your answers with event organizers. Any input (positive or negative) will help to tailor community education to our needs.

[Bill Peckham]

There are some issues with the messaging - looking at the http://tlc.kidneyurology.org/ site - but the main thing is it's hard. It is hard, in general, to get the people you want to attend, to attend and the target group here is likely the hardest group to engage, the 18 to 30 demographic is the least likely to attend events in my experience.

That said, you wanted feedback ... One glaring omission is the time of the event? 10 to 2? 9 to 4? There has to be a basic What, When, Why message. Having Griz should have been a great draw -  that's the sizzle that needed to be sold. The typical marketing would have had a photo of Griz and the headline "Meet fellow kidney patient Griz". Then:
What: Not sure what it being a workshop is signaling -
When: Times are important. People need to know what they're getting into.
Why: Is key. What am I going to get out of giving up my Sunday? What's your elevator message - if you saw a dialyzor and had 30 seconds to sell them on attending. I think your IHD post does a better job with this than the website.

It's an open question on the best way to support people, young or otherwise, but I think you have to start with the Why. If the why is about clinical options or strategies to live with a treatment choice then the best way to convey that information might be one on one. My experience with Expos, PLMs and patient meetings, the amount of work and money and time, when you add it up would support as many or more one on one meetings with patients and their families as attend an in person event. Having a trained educator going through a vetted power point on treatment options, or empowerment tactics, or re/habilitation strategies one on one might be the most efficient way to achieve the education goals of a workshop.

That leaves the support and networking Whys. If that's why we have face to face meetings - to network and support each other - then that would be a different sort of event, rather than a workshop, maybe a casino night featuring Griz.

[Meinuk]

I came late in to the planning stages of this program, but I learned a lot from the people that organized, funded and staffed it. I've never been a big proponent of "events", but I have always thought that it was my own personal prejudice, and I strive to overcome that.

There has been a marketing post mortem done, and the event is postponed, not entirely cancelled.  In my work, I get to plan events and I am starting to rethink the model.  How effective are they?  Would it be better as a gala/celebration as Bill suggested as far as networking goes?  Speaking of which... I can't wait for the next IHD Vegas trip! 

Should the education be directed to a smaller crowd?  Small, demographic specific workshops?  I notice that seminars aren't very well attended either, and since there have been only two responses to this post (one public, one via PM).  I am seriously wondering how to reach people.

Not the people who are reading this post.  If you are reading this post, consider yourself informed and well educated.  You have a thirst for knowledge about CKD, and are engaged in your care or the care of someone that you love - that is what brought you to IHD. I want to reach the 98% who aren't on IHD, who can't afford a computer or the internet and are sitting in that chair suffering - who don't know what we sometimes take for granted - treatment options, who to complain to, that sometimes there IS a better way, and that you need to always question if you are getting the best possible care.

TLC2 (the program above) was tailored to help young adults cope and transition to working and or school and maximize their lives.  KUFA does good programs.  I went to one of their programs on Organ Trafficking last year, and I loved it.  But that was more of a professional education program.

Thank you to Bill and to my PM buddy (we'll talk next week) for your comments. All of this input is helping me to brainstorm the most effective way to reach people. I'll share your feedback with KUFA (the time issue was a glaring omission - since fixed in some publications, but a good reminder to proofread everything before it goes to the printer).

I am just now in the planning stage for a series of "Dialysis Patient" (NOT my choice of title) meetings in upstate New York in September (Buffalo, Syracuse, Rochester and Albany) I think that I will take the lessons learned from my experience with this will help in the planning and publicity of these meetings.

My PM buddy says that I can never write anything in 10 words or less.  I guess that this post proves that. If you could weed through these words and just tell me your thoughts, I would appreciate it.  And the fact that they are public, well, others may learn something too.  I am in a great position in that 100% of my professional life is spent to make the provision of dialysis better.  I can use all the help and insight that you care to offer.

[okarol]

Hi Meinuk,
I mentioned this to Lori Hartwell and she said she had spoken at this meeting in the past and it was well attended. Not sure that helps but thought it was interesting.
Attendance is lower this year for the "Patient Lifestyle Meetings" that the Renal Support Network has across the US each year. The meetings are no cost to the patient and guest, and have a FREE lunch to boot!
Maybe everyone is hanging out on facebook playing farmville?
Good luck with your next endeavor!
 

[Meinuk]

Thanks Karol.  I spoke at one of the RSN meetings earlier this year, there was a good turnout - they wouldn't list me in the program as a patient, but it was pretty obvious once I started speaking.  KUFA puts on great meetings, and the one that has been postponed was a full day of workshops, speakers and activities.  But I am starting to think that programming and face to face meetings are not the most efficient use of energy or funds. There has to be a better way.

All of these entities (RSN, KUFA, NKF, AAKP, etc. etc.) survive on some money raised by volunteer efforts (a small percentage) and the bulk is money donated by the companies that keep us alive.  Amgen, Genntech etc, a tax write off for money/profit from  our insurance companies, Medicare and Medicaid.  When people spend money for these events and they are poorly attended, our Valcyte will still cost $70.00 a pill, EPO $700.00 a vial, and people who need education and support don't get it.

I am beginning to think that this is not money well spent.

Maybe the money should be put into training the professionals who need to be educated about the needs of their patient population.  People who like HDSW* are burnt out and need a better education and support system (better than lashing out on a patient support board).  If we can "fix" a Social Worker, then indirectly, their whole patient population will benefit. The same thing with Technicians, Nurses and Nephrologists. At least when the are are professional programs, there are incentives for them to attend (continuing education). I know that as a patient, I have always been welcome at professional events, and maybe the motivated few will continue to attend these events and bring back what they learn to their peers.

I think that in the case of CKD "consumer events",  the adage "If you build it, they will come" is simply not working.



*HDSW thread: http://ihatedialysis.com/forum/index.php?topic=22961.0