By: Annette McElhiney
As a retired college professor, I firmly believe that knowledge is power and may also result in a longer healthier life. In a recent Wall Street Journal article, “How to Get Patients to Take More Control of Their Medical Decisions” by Laura Landro on Feb. 26th she discusses this topic and more.
Landro writes, “Now researchers and health-care providers say they’re at last figuring out how to untie this doctor-knows-best knot and get patients to take charge of their own health. They’re designing decision aids, for instance, that walk patients through different options, translating complicated medical jargon and statistics about risk into simple language and visual aids.”
She continues “Decision aids, once limited to print pamphlets and brochures, now include interactive programs and videos that patients can view online. The aids walk patients through each option and its possible benefits and harms. Some ask about their health history.”
“A 2014 review in the journal Cochrane Reviews found that decision aids improve patients’ knowledge of their options, make them feel more informed and clear about what matters most to them, and lead them to participate more in decision making. The reviewers concluded that the aids reduce the number of people choosing elective surgery and have no apparent adverse effects on health outcomes or satisfaction.”
After reading this article, I realized how fortunate we ovarian cancer survivors are to have The Clearity Foundation because the experts there have created ovarian cancer specific tools to assist us in making decisions that will result in the best possible treatment outcome.
If you are reading this, you are already aware of the Clearity Foundation’s website and may have read about Clearity, their mission, how to get a tumor blueprint, patient stories, and additional resources.
Some of you are already reading the most recent ovarian cancer research posted in The Clearity Portal. If you haven’t signed up for the Clearity Portal, please consider doing so because the most recent and up to date information is posted there several times a week.
However, one of the most useful ovarian cancer specific tools that Clearity shares can be found on the Clinical Trials pages. If you click on Clinical Trials from the headings on the web page, a pop down menu will allow you to select Clinical Trials, Clinical Trials Basics, Clinical Trial Results, or Find a Clinical Trial. I’m most enthused about the Find Clinical Trial Tool as it does all the work for you.
First click on Clinical Trial Basics and read about eligibility, inclusion criteria, exclusion criteria, and phases. This section will help survivors decide (based on their own situations) which trials they are eligible to participate in.
In addition, before deciding on a trial, check on the actual results coming out of said trial. After clicking on Clinical Trial Results you will be asked to select your status as an ovarian cancer patient. Click on ‘find results,’ and select the description that most closely describes your clinical situation. Select, click, and this screen will appear. Spend some time learning about the clinical trials you are most interested in.
Finally, you are ready to use the Find Clinical Trial tool — the last item on the drop-down menu under Clinical Trials. I’d recommend reading carefully the entire process by clicking here.
Read through this information to learn more terms, find further clarification and see examples. This section is very informative and as I go through the process, I find myself returning to it often to refresh my memory.
You may search for trials by specific drugs, by eligible participants (find which category you fit into), by drug category (if you know which are recommended for people in your category), select the drug category, or by molecular target (these targets will be spelled out in your blueprint).
Now let’s go back to the Find Clinical Trials and give the tool a spin.
Because I’m an 8 ½ year survivor and didn’t recur 6 months after treatment, I know I’m platinum sensitive. I also know that If I am recurring, I will likely need surgery, tumor profile, and then treatment not maintenance, so I’ll choose platinum sensitive. Because survivors live at various locations, convenience is often an issue. So, because my home state is Colorado, I’ll make my second selection location and choose Colorado. I click on this and get my results.
As I peruse the list of available trials in Colorado, I must decide which trial I am eligible to participate in. Since this is my first recurrence, I chose this trial.
If I want to see how successful this trial has been, I can select trial results from the drop-down menu under Clinical Trials. When I come to the next screen, I click and then select platinum-sensitive recurrent. This brings me to this page. By scrolling down, I can see the success rate of NCT00565851.
Because of my positive experiences with The Clearity Foundation, I know I will seek their assistance if I recur. I am confident that their experts will be available to assist me in choosing the best treatment, answer my questions, and support me as I go through the process. Recurrence is stressful indeed, but knowing tools and resources are available to help me make the best choices allows me to feel less vulnerable and empowers me to keep moving forward.
To read more of Annette’s blog posts in The Clearity Portal, please click here.