Patient Advocacy

Like Viva, I contacted SHARE and went to their offices to speak to the then Director of the Breast Cancer Hotline. I went through training, spent some time listening to others handle calls, and then began to take calls on my own.

It was important to know and always keep in mind our purpose at the Hotline. We never offer medical advice, for example, but we often explain procedures or answer questions about cancer, research or even chemo protocols. Sometimes we help callers find resources to obtain financial or legal help. Mostly, we listen, educate and reassure as we provide support or help women find support in their own communities. And, we have a talented and hard-working staff to guide us and help us find accurate answers to questions outside of our individual knowledge. I had called Share more than once when I was diagnosed with breast cancer. Talking to the women on the hot line was immensely comforting. After all, they had what I had, and they were still alive. When I saw a notice in the Share newsletter asking for volunteers for the hot line, I knew I wanted to provide that comfort to other women.


I called and was scheduled for several weeks of evening training sessions. As a group, we discussed how to be good listeners, what a hot-line volunteer should and shouldn’t do (we don’t provide medical advice, for example, but we do give information about community resources), and how to use the telephone (though I still fumble the Hold button and lose calls).


Then I was scheduled to shadow a seasoned volunteer for a three-hour shift once a week. Eventually, I took over that shift. I still remember how nervous I was on my first call. I was concerned that I might say something that would upset the caller.


Nowadays I feel confident that I do more good than harm, but even today there are times when I go home and lie awake wishing I’d handled a call differently. I want every woman who calls to know that I’m listening, that I’m doing my best to understand and that I care about her and what she’s going through.


I love my work on the hot line. There is an instant intimacy you feel with women who are struggling with life-and-death issues. I’ve had conversations with callers that I haven’t had with my closest friends. After all, I have a lot in common with the women who call Share. I was on their end of the line not so long ago.

When I was diagnosed with breast cancer many new people entered my life seemingly within days: surgeons, oncologists, nurse navigators, and a bevy of technicians. I was impressed by the knowledge and compassion that was shown to me on every front. And, for the most part, each professional answered my questions thoroughly and accurately. Yet, despite their best intentions, I felt alone and very, very afraid of what the future might bring. My nights were long and often I lay awake for hours as my worries trumped even my exhaustion.

Then I accepted an invitation to have lunch with a 5-year survivor, arranged by a mutual friend. She told me her story, we discussed topics from chemo protocols to hair loss but--most importantly for me--there she was alive, well, and living a happy and productive life. Suddenly I was able to feel hopeful that my own life was not over and that I, too, could continue to thrive after my diagnosis.

It was at that point that I decided to "model" hope to others once I had recovered from treatment. Good medical care is essential of course but, for me, that one survivor's influence was so uniquely powerful.She helped me deal with my situation in a way that only someone who had been through the same experience could. And, at SHARE we have the chance to answer questions, provide support and show others that they too can move forward and hope for a return to good health once treatment is finished. When I was diagnosed with breast cancer many new people entered my life seemingly within days: surgeons, oncologists, nurse navigators, and a bevy of technicians. I was impressed by the knowledge and compassion that was shown to me on every front. And, for the most part, each professional answered my questions thoroughly and accurately. Yet, despite their best intentions, I felt alone and very, very afraid of what the future might bring. My nights were long and often I lay awake for hours as my worries trumped even my exhaustion.

Then I accepted an invitation to have lunch with a 5-year survivor, arranged by a mutual friend. She told me her story, we discussed topics from chemo protocols to hair loss but--most importantly for me--there she was alive, well, and living a happy and productive life. Suddenly I was able to feel hopeful that my own life was not over and that I, too, could continue to thrive after my diagnosis.

It was at that point that I decided to "model" hope to others once I had recovered from treatment. Good medical care is essential of course but, for me, that one survivor's influence was so uniquely powerful.She helped me deal with my situation in a way that only someone who had been through the same experience could. And, at SHARE we have the chance to answer questions, provide support and show others that they too can move forward and hope for a return to good health once treatment is finished.

Developing my website was a little time-consuming. The initial set up was probably a couple of months and for me, about 30-40 hours most weeks during that time. This is what was entailed:


1. Deciding the tone/message/image I wanted to convey.

Eg., I wanted upbeat, self-empowering, and to have something to offer to survivors of any cancer type. The front page is for all survivors. It’s focus is nonclinical and on what we can do for ourselves in the way of diet, supplements, stress reduction. Organizations doing great things for us. Nonclinical, light, and sometimes funny. Many of the other tabs are for people with specific cancers and some of it is more clinical (treatments, diagnostics, etc).

After I had the tabs figured out, I wrote a few articles for each of the tabs, and found great sites where I could get free images to go with the stories. I also hired a graphic designer to work with me on my logo.


2. Actually setting up the site:

I contacted a survivor with a beautiful website who steered me toward a web developer who was good and in my price range. The designer in turn recommended a web host with a good, inexpensive product. Developing my website was a little time-consuming. The initial set up was probably a couple of months and for me, about 30-40 hours most weeks during that time. This is what was entailed:


1. Deciding the tone/message/image I wanted to convey.

Eg., I wanted upbeat, self-empowering, and to have something to offer to survivors of any cancer type. The front page is for all survivors. It’s focus is nonclinical and on what we can do for ourselves in the way of diet, supplements, stress reduction. Organizations doing great things for us. Nonclinical, light, and sometimes funny. Many of the other tabs are for people with specific cancers and some of it is more clinical (treatments, diagnostics, etc).

After I had the tabs figured out, I wrote a few articles for each of the tabs, and found great sites where I could get free images to go with the stories. I also hired a graphic designer to work with me on my logo.


2. Actually setting up the site:

I contacted a survivor with a beautiful website who steered me toward a web developer who was good and in my price range. The designer in turn recommended a web host with a good, inexpensive product.

Yes we do but at the health care system i go to alot of the Doctors don't know hardly anything about lymphedema. It has been an uphill struggle since diagnoses. I learned alot fast, and been told by Doctor's I was wrong, turns out they were. Have had to file complaints against a few. It's crazy!! Yes we do but at the health care system i go to alot of the Doctors don't know hardly anything about lymphedema. It has been an uphill struggle since diagnoses. I learned alot fast, and been told by Doctor's I was wrong, turns out they were. Have had to file complaints against a few. It's crazy!!

The Department of Defense (DoD) distributes approximately $150M a year in congressionally directed breast cancer researching funding. In addition to the Breast Cancer Research Program, the DoD runs similar programs for a variety of diseases. The programs are designed to provide support of innovative, hegh-risk, high-reward studies. The distribution methodology for all of these programs provides for Consumer Advocates at all levels of the decision-making process, from establishing research priorities for the year, to reviewing each and every proposal, to the final funding decisions. As such, advocates sit on panels right alongside scientists, and have an opportunity to share their opinions, concerns and/or support about all of the projects under review. We are there to put a face on the disease and to bring survivor concerns to the forefront.

Consumer advocates (typically survivors themselves, although not necessarily) can apply directly to the DoD. In addition to your application, you must submit a recommendation from a “sponsoring” agency. Finally there is a brief interview that gives both the DoD and you a chance to address any questions you might have. If accepted, you will be assigned to the next available panel, along with administrative support, a scientific review officer and a consumer advocate mentor to help get you through!

While nothing more is required, if you do not have a medial or scientific background, understanding the proposals can be daunting. I personally suggest that applicants get some measure of background in the science side of breast cancer. The place I turned, and highly recommend, is the National Breast Cancer Coalition Project LEAD. You can find more here: http://www.breastcancerdeadline2020.org/learn/project-lead/


In addition to the inclusion of consumer voices, another hallmark of the DoD program is that all funded researchers are required to share their results at their Era of Hope Conference. It is a way to ensure that both promising results as well as “bad” results become a part of the knowledge pool.

While the DoD model has been implemented in may other grant settings, both domestically and world-wide, DoD remains the most highly sought and respected funders in breast cancer research. You can learn more about being a consumer reviewer for the DoD on their website: http://cdmrp.army.mil/cwg/default.shtml.
The Department of Defense (DoD) distributes approximately $150M a year in congressionally directed breast cancer researching funding. In addition to the Breast Cancer Research Program, the DoD runs similar programs for a variety of diseases. The programs are designed to provide support of innovative, hegh-risk, high-reward studies. The distribution methodology for all of these programs provides for Consumer Advocates at all levels of the decision-making process, from establishing research priorities for the year, to reviewing each and every proposal, to the final funding decisions. As such, advocates sit on panels right alongside scientists, and have an opportunity to share their opinions, concerns and/or support about all of the projects under review. We are there to put a face on the disease and to bring survivor concerns to the forefront.

Consumer advocates (typically survivors themselves, although not necessarily) can apply directly to the DoD. In addition to your application, you must submit a recommendation from a “sponsoring” agency. Finally there is a brief interview that gives both the DoD and you a chance to address any questions you might have. If accepted, you will be assigned to the next available panel, along with administrative support, a scientific review officer and a consumer advocate mentor to help get you through!

While nothing more is required, if you do not have a medial or scientific background, understanding the proposals can be daunting. I personally suggest that applicants get some measure of background in the science side of breast cancer. The place I turned, and highly recommend, is the National Breast Cancer Coalition Project LEAD. You can find more here: http://www.breastcancerdeadline2020.org/learn/project-lead/


In addition to the inclusion of consumer voices, another hallmark of the DoD program is that all funded researchers are required to share their results at their Era of Hope Conference. It is a way to ensure that both promising results as well as “bad” results become a part of the knowledge pool.

While the DoD model has been implemented in may other grant settings, both domestically and world-wide, DoD remains the most highly sought and respected funders in breast cancer research. You can learn more about being a consumer reviewer for the DoD on their website: http://cdmrp.army.mil/cwg/default.shtml.

1. To take charge of their healthcare patients need to decide that their health is priority #1 and they chose to be in charge. This an important decision point, because the other actions follow this commitment. Surprisingly there are many patients who say they want to get better, but really don't because their illness in some way meets their needs.

2. The second step would be to look at health from the holistic view and examine all areas of your life and their impact on your health. For example, financial problems can add tremendous stress, an therefore can adversely affect your health. Relationships,jobs, lifestyle, even your leisure and self care - are all connected to your health and wellness.

3. The third step is to create a specific action plan for those areas that need improvement.

4. The fourth step is to get a "health buddy" to help with accountability and staying on track with your plan. Accountability is extremely important. Just think about all the New Years resolutions that have come and gone after a few months.

This is your health, and you committed to being in charge. Now you are ready for step 2.
Center for Advancing Health President and experienced patient Jessie Gruman says, "People need to realize that finding good health care and making the most of it relies mainly on their actions. We have to work at being informed about when to seek care and from whom and about what we have to do to make the most of the services, drugs and technologies that constitute our treatments."

If you'd like to know more about Jessie and her experiences as a patient, you can visit www.AfterShockbook.com.