FREE WEBINARS - What topics would you like?

[Dori Schatell]

Hi y'all,

In May, Home Dialysis Central will be starting a monthly free, 1-hour Webinar series for our visitors. We've been practicing, and our first speaker will be Dr. John Agar, from Geelong, Australia.

We haven't set the topics--yet, because we'd like your input. You'll see slides, watch the presenter speaking, and have a chance to type questions. So, here's your chance to ask for presentations on things YOU want to know more about. What do you MOST want to learn? If you have an idea of who would be a good presenter, feel free to share that as well.

[Jane]

This is such a happy development- one I've wished to see for a looooooong time. What topics would I like? It's really simple- true dialysis experts who can explain the most basic and important info. patients need to know on how to get safe, optimal dialysis txs. Now I know that is a broad answer to your question. But I'd like to see this general topic broken down into sub topics that really make kidney disease/dialysis come alive in a way that takes the fear out of it and inspires folks to see that it is possible to live a productive, overcoming life despite this medical condition.

You know, start out showing the participants that dialysis spans more than just the 2 modalities that have typically been offered, explaining the deficits and benefits of all the modalities. And then just keep going to describe what good dialysis is and how txs at home are more doable than most ppl think. Show the real picture. Spell it out clearly so ppl can see what it's really all about. Just take everything patients need to know and lay it out one step at a time.

Dialysis info has typically been too general and non-specific. Let's have teaching, that while not too complex, will really show ppl how dialysis works at it's best. The challenge is to get things said on the patients' level while not being too simplistic.

Even though my response may sound too general, it's really not- I would love to hear dialysis explained by the experts who best know how to deliver optimal treatments and any tips they have that turns an average tx into a maximized tx.

[Dori Schatell]

Hi Jane,

Do you want to get really nuts-and-bolts, like how diffusion and osmosis and ultrafiltration work in general and how they differ depending on the modality?

[bobeleanor]

Hi Folks

Hi Dori

What do we need in the way of computer systems? And will we be able to just watch and listen to the series, or see replays if not able to see live?

I don't think DR. John could answers my questions, as my have to deal with legal issues. Do you think at some point HDC would have a consumer rights lawyer who deals with medical issues on? Not some one from a kidney related board (esrd, nkf, dpc etc).


Hi y'all,

In May, Home Dialysis Central will be starting a monthly free, 1-hour Webinar series for our visitors. We've been practicing, and our first speaker will be Dr. John Agar, from Geelong, Australia.

We haven't set the topics--yet, because we'd like your input. You'll see slides, watch the presenter speaking, and have a chance to type questions. So, here's your chance to ask for presentations on things YOU want to know more about. What do you MOST want to learn? If you have an idea of who would be a good presenter, feel free to share that as well.
thanks
Bob O'Brien

[Rich Berkowitz]

What do we need in the way of computer systems? And will we be able to just watch and listen to the series, or see replays if not able to see live?


At the onset, we will be using a platform existing on the internet at WIZiQ.com. People will be required to register in order to participate.

Any PC or Mac will be required running any Operating System, and an internet connection. Obviously a broadband connection is preferable, but dial up is sufficient. In order to hear the presentation, speakers or headphones are required. Most questions will be asked by typing into a chat window, but there is an option to open up a participant's mic in order to ask a question orally. However, to minimize confusion we want to limit the audio capability right now.

Sessions will be recorded and can be reviewed at a later time. This is an important feature as there will speakers from all over the world, which means we must take in consideration international time differences.

[Dori Schatell]

Hi Folks
Do you think at some point HDC would have a consumer rights lawyer who deals with medical issues on?
What are the specific legal questions you are wondering about? Beth may know a lawyer who might be interested. Keep in mind that, like medical advice, no-one will be able to give you legal advice that will fit your personal situation in a Webinar, but someone could certainly provide background and answer questions.

[bobeleanor]

Hi Folks

Hi Dori

Thanks Rich for computer input.

On legal issues ,1Like how much power do dialysis provides have over dialysis consumers? 2 If we the dialysis consumer have rights and we get no help from the network who do we turn to? 3 Are there law firms that deal with not malpractice but medical rights?


What are the specific legal questions you are wondering about? Beth may know a lawyer who might be interested. Keep in mind that, like medical advice, no-one will be able to give you legal advice that will fit your personal situation in a Webinar, but someone could certainly provide background and answer questions.
thanks
Bob O'Brien

[Dori Schatell]

Hi Bob,

Have you read the Rights & Responsibilities module of Kidney School? (http://www.kidneyschool.org). The rights of people on dialysis in-center are pretty constrained, and the new Conditions for Coverage change them only very slightly.

[bobeleanor]

HI Folks

Hi Dori

Yes countless times. The problem as I see is that they deal with ""in center" , besides as i read them and have talked with others on this subject. It seems up to each center to apply the rights and responsibilities as they see fit. And if a consumer want to try and use one of there rights there seems to be a responsibilities that counter the right.


Hi Bob,

Have you read the Rights & Responsibilities module of Kidney School? (http://www.kidneyschool.org). The rights of people on dialysis in-center are pretty constrained, and the new Conditions for Coverage change them only very slightly.

thanks
Bob O'Brien

[Jane]

Hi Jane,

Do you want to get really nuts-and-bolts, like how diffusion and osmosis and ultrafiltration work in general and how they differ depending on the modality?

Sure, we can get to this at the appropriate time. But in my years of being on dialysis, I have found that 95% of nursing staff education in dialysis is woefully inadequate and nurses/techs can not teach us what they don't know. And also, there are so many dialysis myths which are passed around. So, I would like to see the subject of kidney disease/dialysis taught intelligently/logically and the myths dispelled. Every single bit of factual, well taught information is useful for understanding the whole thus putting the patient in the driver's seat.

Also, to address Bob's post. I believe I understand where he's coming from as a fellow patient. As I have stated numerous times in the past, patients' rights are well documented. The problem is- they are not enforced! So I, too, would like some presentations taught by legal experts on what patients can do to obtain advocacy, mediation and legal representation if necessary.

[beachy]

This will be such a fantastic tool for patients and professionals anywhere in the world to access the latest research. It is so remarkable to think that patients can ask real time questions of presenters that they normally would have no chance of seeing and hearing.
My picks would be.....

Latest research on -
Vascular access- effects of buttonholing, pump speed, time on dialysis, sharps vs blunts, fistula care

Optimum exercise, blood circulation, muscle wastage - exercise during and after dialysis ( heard a great exercise physiologist once that organised exercise programs in Singapore for dialyzors whilst on their machines)

Stress - ways to combat stress particularly for the home dialyzor and carer before, during and after dialysis.

Nocturnal dialysis-the perfect home setup situation and ways to have a restful nights sleep

Home Dialysis vs Transplant- the real story about which produces greater longevity, quality of life and good health

Kidney Disease-Any hopeful new research into diseases like FSGS and its reoccurence in transplants. Plasmapheresis- does it work?

And of course (particularly for us Non American) New dialysis machine technology!


I am sure I will think of more if I sleep on it,
Cheers

[Dori Schatell]

Thanks, Beachy, these are great ideas, and very specific. :-)

[bobeleanor]

Hi Folks

Beachy right Any topics that relate to helping all sides on the issues that would be good

Will you be able to get persons from here in the states that come from the different walks of dialysis as it is now and what the future might hold?

Will we be able to email questions in ahead of time to maybe move things along?

thanks

bob obrien

[Rich Berkowitz]

Will we be able to email questions in ahead of time to maybe move things along?

I'm not sure if it makes sense to email questions before since the speaker likes to drive their presentation, but it will be invaluable to have a discussion thread after each session. It may be possible to have a webinar following a 'topic of the month' so participants can read up on a subject beforehand.

[Jessie St Amour]

What a powerful tool ....that can cover A-Z....a virtual libray can be built to send whoever to learn... a fantastic educational tool ....I will personally be spreading the word of WiZiQ at kidney friends....

[beachy]

Dori, Rich.
I can't find an archive of john's presentation on WizIq today. Can you give me the link?

[Jessie St Amour]

Beachy...heres what you do go to WiZiQ...scroll down to Live sessions...then to my sessions...it is thier ...both of them with John

Richard C/O Jessie

[Rich Berkowitz]

We haven't set the topics--yet, because we'd like your input. You'll see slides, watch the presenter speaking, and have a chance to type questions. So, here's your chance to ask for presentations on things YOU want to know more about. What do you MOST want to learn? If you have an idea of who would be a good presenter, feel free to share that as well.

Please don't think we're operating from the seats of our pants — we have plenty of topics and ideas ourselves. It's just that we want you to feel like you have some ownership or stake in what we are doing. It's for all patients, caregivers, nurses and doctors.

Better education means better life. With home dialysis, people have decided to take matters into their own hands. The more one knows about ESRD, the better tools one has to live a longer and more productive life. We've been clamoring for better and more convenient methods of getting quality information. The MEI Webinars are designed to do just that.

So put in your 2¢ — your bound to get a much better return for your money!!!!!!!!!!

[Gus]

Hi y'all,

In May, Home Dialysis Central will be starting a monthly free, 1-hour Webinar series for our visitors. We've been practicing, and our first speaker will be Dr. John Agar, from Geelong, Australia.

We haven't set the topics--yet, because we'd like your input. You'll see slides, watch the presenter speaking, and have a chance to type questions. So, here's your chance to ask for presentations on things YOU want to know more about. What do you MOST want to learn? If you have an idea of who would be a good presenter, feel free to share that as well.


How to break the needle phobia, fear from self cannulation, one the most common problems keeping some in-center dialysis patients from making the switch.

[Dori Schatell]

Good point, Gus! I can even think of someone who might be able to tell folks about his experiences with that...

[Gus]

Good point, Gus! I can even think of someone who might be able to tell folks about his experiences with that...

Another idea, if possible to record these sessions for others who wish to join but cannot but can watch them by just downloading transcripts or something like that.

[Dori Schatell]

They are archived so folks can go back and watch them any time they want.

[bobeleanor]

Hi Folks

Did I miss the date that this was going down?

Bob OBrien

[Dori Schatell]

No, you haven't missed anything, Bobeleanor. Dr. John Agar is at a conference and when he's back in the office we'll settle on a topic and fix a date and let y'all know. I'm thinking possibly the Weds or Thurs after Memorial Day (because I'll be out of town pretty much the whole week before that).

[bobeleanor]

Hi Folks


What ever the topic, do the folks who are going to make the call on the topic think that it should be something that a everyone can ask questions and understand? Or will it be a topic that only the most educated can give and take part in? The one that I understand is that depending on the unit a person is in can make a big difference in understanding the process of dialysis. Not that a topic over my head would be bad ,but it is always more interesting if everyone can ask questions on a subject.

The post that Beachy has on muscle loss was a new one for me and Dori reply was also new. My dr has never talk on ""carnitine deficiency""" he would only look or talk on iron and hemoglobin.

Bob Obrien

[Rich Berkowitz]

Bob, you are so right about people having different levels of understanding and one of the difficulties in planning the webinar sesssions is making the topics and its presentations interesting enough and at a level that attracts the most attendees possible. But at the same time as recognizing the different levels of understanding, it's important to also stretch peoples' understnading so they can learn more advanced subject matter. The idea of the webinars is to educate, educate, educate. That usually means to provide ever increasing concepts, but taking in consideration different levels of attendees, especially as new patients and caregivers come into the scene continuously. It's not as easy as a task as one might think. But with Dori leading the charge, I think we're in pretty good hands.

[bobeleanor]

hey Rich

The other thing I thinking on(by the way I have you to thank for getting me thinking on this once more and your post on""Fluid and Solute Removal""") that some of us(me) can't type and chew gum at the same time.But like you said Dori more than likely has things covered and we can also break down the topic and go at it at slower pace down the road.
bob obrien

[cehill]

The session last week on Waste was excellent.

A session on Access care including Fistulas and Buttonholes.

Charles

[Dori Schatell]

Great idea, Charles. Thanks!