My Interesting Cancer Advocacy Group

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As someone with follicular lymphoma, I joined a cancer advocacy group, but it wasn't what I was expecting.

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There are many types of advocacies. You can advocate for help for yourself or others, personally, professionally, medically, in areas ranging from religion to politics to charities and more. All of these are ways of trying to argue for a change in some situation that you believe needs to be changed in some way. So, when I was invited to join a cancer advocacy group late last year, I thought I knew what it meant. I thought I’d be advocating for other patients with cancer and others with follicular lymphoma. I was wrong. Sort of. And sort of not.

The group was created by a major university nearby, one with a large oncology research center, which includes research projects from phase 0 to phase 4. It starts with reviewing past research and ends with trials involving thousands of people. The group meets monthly for two hours per meeting, and there’s a lot of information crammed into those two hours.

Universities and medical centers that perform research must get funding, often obtained through grants from various government and charitable organizations. The ultimate purpose of this group is to provide patient and caregiver input into grant proposals; because some grant providers require patient advocates, some applicants believe that having a patient advocate increases the chances that the grant request will be funded, or both. Training patients with cancer and caregivers to understand the input needed for these grants, and how to provide it, is the purpose of this group.

The training has ranged from basics of what cancer is, to the general types of treatments and how they work, to presentations about research happening now at this university oncology center. It has also included upcoming grant proposals, some of which we have been invited to provide feedback about. This process has given me a view of researchers that most patients don’t have.

Many of these doctors have only a clinical understanding of the side effects of the treatments they’re investigating. They know, from trial patients reports, that a treatment may cause any one, or several, of a long list of possible side effects, but, with very few exceptions, they haven’t experienced cancer or cancer treatment personally. They tend to not understand all that, to patients, treatment consists of more than just what happens when medication is taken, whether it’s swallowed, infused, radiated, or however it’s given; to them, treatment is something that happens when the treatment is given, and they don’t include things like blood tests, scans, installation of a medication port or doctors’ appointments to be part of the treatment.

The training process has been interesting, enlightening, and occasionally frustrating. Medical researchers have terminology specific to their profession, and it’s often highly scientific terminology that consists of multi-syllabic medical terms and formal wording that can be hard to follow; they take it for granted, because they’re used to it. Some of the grant applications require a summary statement that has to be no more than 100 words, written at an eighth grade reading level. This means using simpler words and shorter sentences, which is very hard for the researchers to do without taking out information they want to include.

One researcher showed us the draft of her summary and asked us to help her rewrite it to meet the eighth-grade requirement. She had to explain almost every scientific term used in it to the non-medical members of the group. After we talked about it for a few minutes, she began to understand why her trial patients had so much difficulty understanding the materials they were given to explain the trial; she was so used to the language she used in professional writings that she truly hadn’t realized that the written materials were incredibly hard for non-medical personnel to follow.

Being part of this group is proving to be a very interesting experience. Sometimes it’s exciting, confusing, frustrating and exhausting, but definitely interesting. Seeing how much the perspective of medical researchers differs from that of patients and caregivers is fascinating and infuriating by turns. I can see, now, that my oncologist is a good bridge between the researchers who created the treatments he prescribes and the patients he prescribes treatments for, and that — however confused I was when I was first diagnosed, however little I understood the mass of information I was provided with — his ability to explain the process, and the reasons behind choices of treatment modalities, as well as to understand what his patients are experiencing, significantly exceeds that of most of the researchers I’ve met so far.

I hope that all of this effort has the desired outcome: that researchers who are trying to find newer, better treatments for patients receive the funding they need. Also, that patient advocates such as myself can help those researchers understand patient perspectives on how treatment impacts us personally and take that into account in their results and recommendations, not just use us to obtain funding.

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