Student Who Needs your help

Hello,

My name is Marino Fernandopulle and I am a 4th year student at the University of Toronto. I have undertaken a project in conjunction with the Toronto General Hospital in Toronto, Ontario, Canada, to enhance the communication and care of patients undergoing Nocturnal Home Hemodialysis. My idea was to develop a forum/discussion board much like “Home Dialysis Central”, and this idea was supported by those at Toronto General. I was wondering if the members of this board would be so kind as to assist me in developing a successful web community for those in Toronto.

In doing so, I have a couple questions that I hope you would be able to answer for me:

1.) How has “Home Dialysis Central” been beneficial to you?
2.) Are you concerned that that information you receive may not be fully accurate? Has there been an instance where this was the case?
3.) In addition to the discussion board, is there anything else that you might find useful while undergoing treatment in your homes.

Please know that my intentions are good, in that my goal is to enhance the care of patients such as yourself. If you do not feel comfortable answering these questions, I would even appreciate any type of insight that you might be able to provide.

I appreciate your time in reading this thread. I hope to be in contact soon.

Thanks and Best Regards,
Marino Fernandopulle

Sounds like an excellent goal there, but what kinda of assistance are you seeking for? Web development? Or just tips?

As for your questions, the web is a powerful tool of information highway but also can lead to mistakes and errors, so everything we read shouldn’t be taken as a final answer to our quest for answers but as a tool to help guide us to achieve on what we want to find out, best known as a research tool. “Home Dialysis Central” has been Very very beneficial, the tools the resources it provides are necessary for us home patients and those new home patients to be…information shared between patients in particular is the nessageboard is a BIG mover in the community, they share their own experiences at home…

On the other hand, the evolution of dialysis into the home should also be brought into the subject of internet as this tool the internet will be worthy for all patients doing home dialysis. An instance of home training should also include training on how to use a FAX for sending in reports instantly, internet for monitoring patient’s reports and data. All this boils down to saving time and money.

Hi Marino,

Is there some reason why your Toronto patients couldn’t just take part in this discussion board? They speak mostly English in Toronto, don’t they? We have people participating from other countries. Why reinvent the wheel?

1.) How has “Home Dialysis Central” been beneficial to you?

It is benficial hearing about patients’ first hand experiences which serve to help us not to make the same mistakes or can encourage us to know how to do something for our txs.

2.) Are you concerned that that information you receive may not be fully accurate? Has there been an instance where this was the case?

Certainly, sometimes the info. is not correct as it is someone’s idea not based on fact or it may be info suited for one person but not another etc… But there is much info that is accurate, highly useful and supportive.

3.) In addition to the discussion board, is there anything else that you might find useful while undergoing treatment in your homes.

To me, the thing that would be the MOST useful would be accurate education from medical professionals on this board or on a direct phone line.

Please know that my intentions are good, in that my goal is to enhance the care of patients such as yourself. If you do not feel comfortable answering these questions, I would even appreciate any type of insight that you might be able to provide.

Education is the key to conquering a chronic illness. Education takes away the fear and is the means to livng well despite the disease. I can read books, articles, or internet posts. But the thing I feel I need most is knowledgeable medical people who are willing to educate me. I am a willing student - I wish the medical professionals would make themselves available.

I’ve visited many boards about kidney didease all over net, what sets them apart are that they all have their own style of presenting information and that’s unique…diverse…

For example, Davita has their own boards which I also visit and its different up there…

In my opinion many resources is better than just one place to visit… :roll: