Patients and researchers

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Comment by Burt on May 18, 2008 at 7:31pm

I have done lots of dental surgical research. In dentistry today there is a stain that can be placed on a suspected oral cancer leison and then hit with a special light. It it turns color is very high likely cancerous. It seems like this might be a way to find any remainging cancer cell areas during the surgery if the light and stain could be used in the prostate areas since we are dealing with adenomas. Might be area for some animal clinical surgical studies.

Comment by Kathy Meade on April 10, 2008 at 12:18pm

NCI's Office of Advocacy Relations (OAR) is sponsoring an "Understanding NCI" teleconference series. The next call in the series is "Clinical Trials in Your Community: NCI's Community Clinical Oncology Program (CCOPs)," on Thursday, April 10, 2008, from 2:00 - 3:00 p.m., EST.

The featured speakers are: Dr. Lori Minasian, Chief, Community Oncology and Preventive Trials Research Group, NCI's Division of Cancer Prevention; Dr.
John Kugler, Chairman, Executive Committee for the North Central Cancer Treatment Group (NCCTG); and Ms. Laura Matus, Volunteer Coordinator and Patient Advocacy Liaison, Illinois CancerCare. A Question & Answer session for participants will follow.

No registration is required for participation. To join the teleconference, dial toll-free within the U.S. 1-800-857-6584. The passcode is: Prevention.

If you can't participate "live" on the day of the teleconference, listen to the replay of the call through May 10, 2008 by dialing toll-free 1-800-284-7027.

To learn more about CCOPs, visit:
http://dcp.cancer.gov/programs-resources/programs/ccop.

For more information about the Understanding NCI: Toll-Free Teleconference Series and to learn about past teleconferences, please visit:
http://advocacy.cancer.gov/.

Comment by Kathy Meade on April 9, 2008 at 6:43pm

Thought some of you may be interested.

Dear Kathy Meade

Would you or know someone who would like to:

Have a greater understanding of science and the ethics of genomics research?
Be able to relate these concepts to specific research results?
Be more effective in understanding and communicating research results that will change how cancer is treated?
Then come learn with us. Apply today or recommend someone to participate in the Focus on Research class for 2008. The program includes exciting discussions about concepts in oncology research and how research results translate into improved care for cancer patients. The time is short and we ask your immediate consideration to apply or forward this information on to someone in your organization.



Applications for Focus on Research Science Preparatory Class now available

Applications are due April 21, 2008.


Highlights of the program:

Lecture Series with facilitated discussion groups begins in May
Networking events at the ASCO meeting
Attendance scientific sessions at the ASCO meeting
Attendance at the ASCO research review session at the ASCO meeting
Opportunities to be a more effective advocate and communicate with researchers and your patient constituency better.
Applications are due April 21, 2008.

The application is available for download in Microsoft Word format for electronic transmittal http://www.researchadvocacy.org/publications/FOR_Info_Sheet_and_App_2008.doc


The application is available for download in Adobe pdf format to print, complete and fax: http://www.researchadvocacy.org/publications/FOR_Info_Sheet_and_App_2008.pdf


Questions? Please email erailey@researchadvocacy.org.





Research Advocacy Network, Inc. | 6505 W. Park Blvd, Suite 305. PMB 220 | Plano, TX 75093
Phone & Fax 877-276-2187 | info@researchadvocacy.org | www.researchadvocacy.org

Comment by E. Michael D. ("Mike") Scott on April 8, 2008 at 10:24pm

Both your last two comments are correct. If we are to make this group successful we need to monitor it with care. There is very definitely a "listening and learning" component. Many of the researchers are not very good at the former. (It's an ego thing!) And of course the patients are missing what the researchers consider to be fundamental knowledge (which is often confining).

Yes the myeloma patient was an official SWOG committee member, and he is perhaps more knowledgeable about myeloma than half the docs who treat it. And yes we absolutely need to get a couple of respected researchers on board to attract other. I'm thinking about that. I know several but I want a couple that will take this seriously.

Comment by Kathy Meade on April 8, 2008 at 7:08pm

Imperativa,

I think the invitation to join the group to the researchers should come from a peer. Some are much more open than others.

Comment by Kathy Meade on April 8, 2008 at 7:03pm

It makes sense if you can get the researchers to join the discussion. My experience has been that you have to be where they are to get them to listen. You also have to know what you are talking about so that you get their respect. Often rather than asking for things I have found I was most successful, especially in the beginning by asking questions as part of their discussion. In your SWOG example I would say "Can we give a lower dose?" rather than "Give them a lower dose".

Was the myeloma patient an approved advocate on the SWOG committee?

I worked with Deborah Collyar, a breast advocate, training advocates for the SPORE program. The connections between the prostate cancer researchers and advocates was more difficult than for many of the other organ groups. So much of it is about relationship building and networking. The successful research advocates became part of the research team. It took time.

How do we get the researchers to join the group? What is their incentive?

Comment by E. Michael D. ("Mike") Scott on April 8, 2008 at 5:23pm

Hi Kathy:

I think there are two very different (but connected) opportunities here:

1. We can certainly help to train people to be more active as research advocates and to understand how to participate in the initiatives organized by SWOG, ECOG, NCI, FDA, etc. That in itself would be a good thing. However, participating in these things is a formal activity and can become time-consuming for many people. My basic concept was simpler, and that is:

2. To generate actual on-line discussion between researchers and patients on an ongoing basis such that the researchers gain ideas from patients who do not have the time to participate formally in agency reviews, etc. So, for example, the idea to use a lower dose of dexamethasone in the SWOG trial did not need the patient to be on the SWOG committee: it only needed him to convince someone on the SWOG committee to listen to the idea and act on it!

What I would like to do is provide a forum where the research can and do listen to good ideas from patients and act on them, thereby saving everyone from having to try to do things they really aren't good at (like sitting on committees unless that's the sort of thing one really wants to do!)

Does that make sense?

Comment by Kathy Meade on April 8, 2008 at 11:59am

Mike I guess my question is what the goal is that we have and what role would patient advocates have in this process? Are we attempting to train people to be more active as research advocates? What can we accomplish here to impact the research process? The example you give of the SWOG situation means that advocates have to get involved in the SWOG process. Patient advocates can get involved in the process by getting involved with the groups listed at this link.

http://tinyurl.com/4qwwcm

There are two opportunities that are accepting applications now.

http://tinyurl.com/3jee95

This is the best opportunity for people early in the process.

http://tinyurl.com/3sj824

Some good training material on drugs can be found here.

http://tinyurl.com/54fzg6

As I said earlier understanding the science will help us move forward and better communicate with researchers and make changes.

Some additional training materials can be found at this link.

http://tinyurl.com/3wgnrr

Again what is our goal in this discussion?

Comment by E. Michael D. ("Mike") Scott on April 8, 2008 at 8:43am

OK Kathy ... I agree. Let's get something off the ground here. We can use this as a "testing space." People can contribute here without all the travel and hassle involved in participation in the NCI, AACR, and related programs. Invite everyone you can think of here (including researchers we know) and maybe what we can arrange to do is issue "policy papers" on specific reseacrh topis and ideas!

Whatcha think?

Comment by Kathy Meade on April 7, 2008 at 4:07pm

The CARRA program at the NCI is closed to prostate cancer research advocates because they have too many. The SPORE program also has patient advocates in the prostate SPORE.

The FDA has a program for patient advocates.

AACR has several opportunities for patient advocates.

I let people know about these opportunities but very few seem to be interested.

I think prostate cancer needs a program like the project LEAD at NBCC.

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