Topic: The Patient Advocate's Role in Cancer Research

The Patient Advocate's Role in Cancer Research.

http://www.cancer.net/all-about-cancer/ … r-research

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

2 (edited by marions Thu, 14 Nov 2013 15:50:53)

Re: The Patient Advocate's Role in Cancer Research

Thanks for posting this Gavin.

A few comments: 
I would like to address some of the key points:

Fundraising:  we are witnessing increased activities in this area mainly due to the involvement of individuals focusing on this particular are. 

Additionally, we see in increase of donations from private individuals.  (Some as high as $20 thousand per year)

At a national level, patient advocates lobbying has yet to evolve with larger participation addressing our disease.  Reason:  We lack the necessary staffing.

I represent the patient community within the cooperative groups setting, i.e. NCI sponsored the North American Hepatobiliary Task  for Clinical Trials Phase II/III.  However; we are greatly understaffed in this particular area.  We desperately need others to join in and advocate for our patients in various other clinical settings.

Research Advocacy Network Advocate Institute runs a class each year to train advocates in the basics of cancer research, provides the experience of attending the ASCO Annual Meeting, and helps advocates disseminate the research to the patient constituencies in their community. 
Percy, Karen, Linda, and I have participated in their program.    But, I am now looking for others to do the same.   

I would love others to attend with us ASCO 2014, Chicago, May 30-June 3, and receive this excellent training that RAN offers to advocates.  Please, contact me: marion.schwartz@cholangiocarcinoma.org

And, not to forget:  each member on this site is an advocate in his/her own right.  Information shared, assimilated and provided to others encompasses the area of Patient Advocacy.

In a broader sense, the very rapidly changing role for advocacy groups such as the Cholangiocarcinoma Foundation is setting precedence for the changes to come within the near future. 

Thanks and hugs to all,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: The Patient Advocate's Role in Cancer Research

Well said, Marion.  Thank you for your continued hard work toward meeeting these monumental goals.

Willow

Re: The Patient Advocate's Role in Cancer Research

Thanks much, Willow.  But, I need to point out and report on this in a later postings that the setting of medical research trials, FDA drug approval, and patient input will drive the future in disease treatments.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: The Patient Advocate's Role in Cancer Research

Hello my Friend, Marion! Looks like a lot will be driven in the future but we are fortunate to have you 'driving' us in the best of ways. There are not enough thanks for all you do.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: The Patient Advocate's Role in Cancer Research

Thanks for that Marion, and of course for everything that you do for us all!

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.