Why Your Patient Story Matters

“Tell me a fact and I’ll learn. Tell me a truth and I’ll believe. But tell me a story and it will live in my heart forever.” North American Indian proverb

As a patient or caregiver you may be asked to share your personal story with others. Your story serves as a powerful tool for raising awareness and offering valuable insight into the patient experience. Stories can be a bridge between the technical, rational world of scientific practice and the experiential world of patients. Stories also create a shared sense of meaning and community in our lives, lessening the isolation many of us feel when faced with a chronic illness.

The Power of Story

Stories have existed in our culture from the beginning of time. We use stories to derive meaning from experience and to pass along knowledge and wisdom. Recent breakthroughs in neuroscience reveal that your brain is in fact hardwired to respond to story. Your brain on story is different from your brain when it is receiving any other form of information, including straight facts and data. While facts and figures engage a small area of the brain, stories engage multiple brain regions that work together to build rich emotional responses.

In 2010, a group of neuroscientists at Princeton University used an fMRI machine to monitor what was going on inside the brains of both story-tellers and listeners simultaneously. They discovered that whilst the speaker was communicating to the listener, both their brains showed very similar activity across widespread areas. Their brains were effectively ‘in sync’ with one another suggesting a deep connection between storyteller and listener.” [1]

Tapping the Power of Patient Stories

Humans have an innate desire to feel connected with others who live life through similar lenses. When I first started telling my own story on my blog Journeying Beyond Breast Cancer, I did so in the hope that others on the same path might find some resonance and the knowledge that they are not alone. Chronic illness can be an isolating experience but the very act of sharing our stories with others counteracts the isolation we so often feel. It carries within it the seeds of community and connection which makes us feel less alone in our journey. Diabetes patient advocate and blogger Renza Scibilia captures this feeling when she writes: “There are billions of stories in the world and when we find people we connect with, we reach out and want to hold on. I know that’s how I feel about the Diabetes Online Community – I hear familiar stories and want to grab onto them and the people who wrote them because they help make sense of my diabetes life.”

Patient advocate and author, Jackie Barreau, believes the importance of sharing her personal story lies in “the ability to connect, empower and help others. It is also uplifting and inspiring to hear of people’s hardships whether through illness or unfortunate life events and the positivity & optimism they convey”.   Not only can sharing your story lessen feelings of isolation and open up new avenues of support, it can also offer vital diagnostic clues when others are searching for answers. Jackie explains, “through my volunteer work with for example, the Unicorn Foundation, as an admin for an online patient support group I see first-hand patients joining our group due to lack of knowledge and misinformation provided by their general practitioners and also physicians.”

The National Gaucher Foundation of Canada has coproduced an excellent storytelling toolkit with rare disease patient advocacy organization, Global Genes. It states that “medical terminology and data, though undeniably important, can obscure what it means to live with a disease and make it difficult for most people to relate. Personal stories, though, frame our individual experiences in a way that lets others connect and find diagnostic clues that may have been missing.” Isabel Jordan, the mother of a son with a rare disease, credits reading a patient’s blog to help her finally see the pattern in symptoms in her own son’s life, which set them on a new diagnostic path. “As a parent of a child with a rare disease I’m constantly looking for patterns, for clues, for ideas of what could be next in our diagnostic journey,” she writes, “I look for researchers, doctors, other connected parents to see what they are posting. It was through reading someone else’s blog that I could finally see the pattern in symptoms in my own son’s life. Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path.”

How To Tell Your Story

Whether you tell your story through public speaking, print or online social media, take some time to plan ahead for what you will share and how you will share it. Speak from the heart; be accurate, honest and persuasive. The following questions will help you to develop your story in order for it to have maximum impact.

  • How much of my personal story am I willing to share? Be prepared that telling your story might make you feel emotional and vulnerable so enlist some support if you think you might need it.
  • What is too private to share? Let the audience know your boundaries.
  • How comfortable is my family with me talking about my story (or theirs)?
  • What supporting material will make my story stronger? Can you use pictures, research data, and statistics to support your story? Create an experience in images that evokes an emotional response.
  • What is the main take-home message you wish to leave your audience with? Focus on two or three main points for clarity.
  • What do I want my listener to do when I am done? Do you want your listeners to take action after hearing your story? Outline clearly the next steps they can take to do so.

Taking the decision to share your story is a personal one. Emma Rooney, a rare disease patient advocate has this to say:

“I’ve been telling stories since I was a child but my health story always seemed like something to keep private. Despite living with a rare disease my entire life, it wasn’t until becoming a young adult that I decide to share my journey with Gaucher disease. Openness to sharing has led me to other patients who have similar health experiences, and also connected me with stories that are very different from my own. This diversity helps me to better understand my condition and to connect the dots with new information. Storytelling has provided a type of healing that drugs alone can’t offer. My health is an evolving story, and continuing to be a storyteller is part of my wellness strategy and my way to contribute to the global community of patient advocates.”
Each of us has a compelling story to tell; a story with the power to build connection, increase understanding, and move others to take action. Developing our skills as storytellers is a powerful tool in our patient advocacy toolkit. Your story is a precious resource; use it wisely and well.

[1] PNAS.org: Speaker–listener neural coupling underlies successful communication by Greg J. Stephens, Lauren J. Silbert and Uri Hasson.

MyLifeLine: Learn About Clinical Trials

Editor’s Note: This post was originally published here on MyLifeLine.org. The mission of MyLifeLine.org is to empower cancer patients and caregivers to build an online support community of family and friends to foster connection, inspiration, and healing through free, personalized websites.

Learn About Clinical Trials

MLL ACT

Why consider a cancer clinical trial?

What clinical trials can offer, from the care you receive to the impact you can make.

Clinical trials offer a chance to receive investigational medicines or procedures that experts think might improve the treatment of cancer. This important option is not limited to people who have run out of choices. In fact, there may be clinical trials for every stage of disease in dozens of cancer types. In this video, patients and doctors share their perspectives on why joining a clinical trial may be an option worth considering.


“To have the opportunity to go on a clinical trial for a patient is extremely exciting.” —Sandra Swain, MD; oncologist


Screen Shot 2016-05-18 at 10.23.06 AM
Concern:
I don’t want to be a guinea pig for an experimental treatment.
The Truth:
Cancer clinical trials are developed with high medical and ethical standards, and participants are treated with care and with respect for their rights.

Concern:
I’m afraid i might receive a sugar pill or no treatment at all.
 The Truth:Cancer clinical trials rarely use placebo alone if an effective treatment is available; doing so is unethical.

Concern:
Cancer clinical trials are only for people with no other treatment options.
 The Truth:Trials can study everything from prevention to early- and late-stage treatment, and they may be an option at any point after your diagnosis.

Concern:
I’m worried that I won’t receive quality care in a cancer clinical trial.
 The Truth:Many procedures are in place to help you receive quality care in a cancer clinical trial.

Concern:
People might access private information about me if I participate.
 The Truth:In nearly all cancer clinical trials, patients are identified by codes so that their privacy is protected throughout and after the study.

Concern:
I’m afraid that my health insurance will not help with the costs of a cancer clinical trial.
 The Truth:
Many costs are covered by insurance companies and the study sponsor, and financial support is often available to help with other expenses; talk to your doctor to understand what costs you could be responsible for.

Concern:
Informed consent only protects researchers and doctors, not patients.
 The Truth:
Informed consent is a full explanation of the trial that includes a statement that the study involves research and is voluntary, and explanations of the possible risks, the possible benefits, how your medical information may be used, and more. Informed consent does not require you to give up your right to protection if the medical team is negligent or does something wrong.

Concern:
I’m afraid that once i join a cancer clinical trial, there’s no way out.
 The Truth:
You have the right to refuse treatment in a cancer clinical trial or to stop treatment at any time without penalty

How to know if a cancer clinical trial is right for you.

There are many factors to keep in mind when considering a cancer clinical trial.

As with any important decision, it’s a good idea to think about the risks and benefits of joining a cancer clinical trial. This video encourages you to ask your medical team about all of your treatment options, including cancer clinical trials. Trial participants, doctors, and patient advocates explain the factors you’ll want to keep in mind as you consider your treatment plan.


“I’ve always advised patients…when the circumstances weren’t urgent, to take time to understand their disease and to evaluate the alternatives.”  —Sandra Horning, MD; oncologist and chief medical officer


What to ask your doctor(s)

Asking The Right Questions Keeps You Involved In Your Care

A cancer diagnosis is often overwhelming, and it’s sometimes hard to gather your thoughts and know the right questions to ask. This video talks you through some of the questions it will be helpful to ask about your cancer, your treatment options, your doctor, and about whether participating in a cancer clinical trial is right for you.


“Talk to your doctor and say, ‘Tell me my full options.’ Raise questions. Be a pain in the neck. That’s what the doctor is there for.” —Arthur Caplan, PhD; medical ethicist


Screen Shot 2016-05-18 at 10.29.37 AM

Rules And Procedures Are In Place So That You Will Receive High-Quality Care

Before a single patient can join a trial, many different experts must approve every detail of the study—from why it’s being done to how often patients should be monitored. Once the trial begins, more unbiased experts provide oversight to check that the rules of the trial are being followed and patients’ rights are protected. This video features doctors and patient rights advocates explaining the high standards by which trials are developed and run.


“I explain…that when they’re on a clinical trial, they’re going to be followed very closely by…specific guidelines.” —Daniel P. McKellar, MD; surgeon and Commission on Cancer chairman


Informed Consent Describes The Study Process, Potential Risks And Benefits, And Your Rights As A Participant

If you are eligible and decide to join a trial, you will be required to review and sign the informed consent forms. This can be an overwhelming process, but it is how you will learn all the details of the trial, including the potential benefits and the possible risks, and give your permission to be treated. This video features patients, doctors, and patient rights advocates who offer tips and insights to help you navigate the process of informed consent.


“When I received the stack of papers…it made me realize this is really serious. But then…it was actually a good feeling to know that this was not something that was being done lightly.” —Rose Gerber; trial participant


Information And Support Are Close At Hand

Because so many people have been affected by cancer, there are many reliable and helpful resources to help you through your cancer journey. In this video, trial participants and doctors help you find the people and resources that may be helpful in educating you about cancer clinical trials.


“The first thing is to hold on tight and be optimistic and to get very engaged and educated about your cancer.” —Jack Whelan; trial participant


Reliable Resources To Help Along The Way

First, talk to your doctor

Your healthcare team is the best source for information about your treatment options, including cancer clinical trials. There are many questions you’ll want to ask your healthcare team when you’re ready to discuss treatment options. Print this helpful Discussion Guide and bring it to your next appointment so that you don’t forget anything important. Record your answers on the form and keep it handy for future reference.


Where to find information about cancer clinical trials

These clinical trial resources will help you find trials that might be right for you.


Support services

These trustworthy sources provide assistance with trial-related costs, which may not always be covered by insurance.

Practical support

Financial support

Additional nationwide support organizations


Don’t go it alone

There are millions of people just like you who are ready to ACT against cancer. These organizations provide advocacy, information, awareness, fundraising opportunities, and a community of like-minded people touched by cancer.

Ralph Wozniak: Don’t Get Depressed, Get Informed

Interview with Ralph Wozniak, Patient Advocate

Andrew Schorr, interviews Ralph Wozniak, who has been living with advanced prostate cancer for more than 10 years. He says he overcame his disease by concentrating on the next steps in his treatment plan, and not focusing on the cancer. He urges other patients, “Don’t get depressed, get informed.” Together they discuss strategies and tools currently available for advanced prostate cancer patients to stay positive and to get informed about their disease.

Ralph Wozniak: Don’t Get Depressed, Get Informed from Patient Empowerment Network on Vimeo.

 

[accordion]

[toggle title=”Full Transcript Here” state=”closed”]

Andrew Schorr:

Hello and welcome to Patient Power. I’m Andrew Schorr. I’m sitting with Ralph Wozniak, who is from Inverness, Illinois, outside of Chicago, moving to Florida pretty soon. Let’s go back to 2006. You went to the doctor and eventually were told you had prostate cancer and that maybe it was advanced. Is that right?

Ralph Wozniak:

Well, they weren’t quite sure. It was sort of borderline, but it turned out to be advanced, yeah.  It was Gleason 6—excuse me, Gleason 7.

Andrew Schorr:

So they said let’s try robotic surgery. Let’s see if we can handle it.

Ralph Wozniak:

Well, you make that—as a patient, you make that choice yourself, so reading some books, talking to the doctors, talking to the urologists.  She thought I would be a good candidate for robotic surgery.

Andrew Schorr:

So they try it.  What happened in the OR?

Ralph Wozniak:

Well, I woke up feeling pretty good. But while I was being operated on, they checked several lymph nodes. And they found that they were involved, so they aborted the surgery.

Andrew Schorr:

Okay, because it had spread.

Ralph Wozniak:

Because it had spread, correct.

Andrew Schorr:

So you’re given, if you will, the bad news.

Ralph Wozniak:

Yes.

Andrew Schorr:

How did you take that? You’re a chemical engineer by training. You’re a man used to facts and figures, statistics.  This was not good.

Ralph Wozniak:

Correct, but I overcame it very quickly and said, well, what’s the next step?  Where do we go from here?

Andrew Schorr:

Now, you’ve been through a lot of steps.

Ralph Wozniak:

Yes.

Andrew Schorr:

This was 2016 as we do this. You were having that surgery in 2007, I believe.

Ralph Wozniak:

’06.

Andrew Schorr:

2006, so 10 years, right? Come a long way.

Ralph Wozniak:

Yes.

Andrew Schorr:

You’ve had radiation, you’ve had hormone therapy, you’ve had more advanced therapy, pills and shots, etc.

Ralph Wozniak:

Right.

Andrew Schorr:

How are you doing? Because when all this started you didn’t know if you’d live very long.

Ralph Wozniak:

Yes, I didn’t know if I was going to live very long, but I just, you know, tried to be the informed patient, study hard, get the best doctors, and if you didn’t like the doctor you have to change doctors and just continue on a path.  And I chose to work very closely with Dr. Daniel Chevron at Kellogg Cancer Clinic here at North Shore Hospital and also Dr. Charles, everybody calls him Snuffy Myers in Charlottesville, Virginia, and those have been the two guys, the two doctors I’ve worked with and they’ve been great. Plus the radiation doctors, who…

Andrew Schorr:

…you have had a lot of radiation.

Ralph Wozniak:

Yeah, probably almost a hundred days.

Andrew Schorr:

So how have you dealt with that, sort of the ups and downs of treatment, then no radiation, then you’re doing well, then other stuff?  How have you dealt with that and how has your family, your wife Janet, your kids—you have six grandkids, I think.

Ralph Wozniak:

Well, everybody has been very supportive. Sure, you go through ups and downs mainly driven by how you feel because, to tell you the truth, in the first set of radiation I did get a lot of side effects, but I went to work every day. I was actually retired but retained by the company as a consultant, and I was bound and determined not to get overly worried about this.  So I went in for radiation and got in the car and went to work.

And a second set of radiations with Dr. Dattoli in Sarasota, I was spending some time in Florida, and I drove every morning, hour-and-a-half to Sarasota and had my radiation treatment. And that’s when I had the lymph node involvement, which I explained to you, and which was successful—and went up and back.

It’s, you know, it’s painful. You don’t feel good, you’re not happy, and I got to say probably the first time in my life I ever took a nap was during some of these—the second set of radiation treatments.

Andrew Schorr:

How are you doing today? So now, we’re 11 years down the road, right, just about, and we’re looking at a time when there [have] been new treatments, targeted radiation, pills, improved shots.  Lots of things have changed.  Where are we now?  Where are you in your head, and what would you say to other men who are diagnosed now?

Ralph Wozniak:

Well, first thing, I think there [are] better tools now to determine how advanced the cancer is, and I think that’s the most important thing, that you start out with the right therapy at the right time or the right set of doctors.  And so I mean there’s the 3 Tesla MRI, there [are] other scans. As I mentioned, I took the C?11 acetate PET scan, and that’s the first time with all the scans I’ve had that they’ve been able to locate some cancer in the bone.

So number one—well, number one, don’t get depressed.  Get informed. Join a support group, which I didn’t do for quite some time, because I didn’t think it was my style. But I thought it was quite good once I got into one of the Us TOO support groups. And, you know, then you have to just pick your best strategy to go forward, so that’s what I would recommend. And as far as where I stand now, I’m happy because abiraterone acetate (Zytiga) works, and I’ve been very lucky..

Andrew Schorr:

It’s worked for you.

Ralph Wozniak:

…and I’m not independent of hormone therapy yet, and got great doctors, and we’ll just keep going and see how long the Zytiga works. And if that doesn’t, maybe something else will come around.

Andrew Schorr:

How do you feel about the future?

Ralph Wozniak:

Oh, positive.  I’ve never really been too depressed about this, you know. Maybe—maybe it’s God’s will or whatever you want to say, and I just, you know, went straight in. What are you going to do? I have to say, and it’s really important, and I never give my wife enough credit.  She’s put up with some of my tantrums and my, you know, not being quite happy.  And most of it it’s driven by not feeling well, by the medicine or by the radiation, or I did have some serious side effects from the first set of radiations. And I had to go in for some ablation, laser ablation and stop the bleeding and that kind of thing. So, but all in all, I’m positive, and I feel good.

Andrew Schorr:

Good for you.  One last thing, and that is many men have trouble talking about it. They get inside themselves, the cancer’s there, it’s spread.  Maybe there will be technology or science, they hope, they hope, they hope. But still it’s all in here, too. You joined a support group. You talk about it. What would you say to men about considering that?

Ralph Wozniak:

Well, I have to be honest. I didn’t tell anybody at work except the president of the company.  I only told my family, and this is my coming out of the closet, you know. Close friends, I’ve been very open. To me, you know, having a scientific background, it’s just science, it’s chemistry, you know, it’s physics. So it happens to everybody sooner or later.

It never really bothered me to talk about it, but I didn’t want to have a situation where people were talking about me and saying I couldn’t do this, or I wouldn’t do that or trying to prejudge. So that’s why I kept it very narrowly focused, but now I’m fully retired after 11 years as a consultant, and I don’t care as much.

Andrew Schorr:

Well, I know you’re moving to Florida. I wish you a great retirement there and many years.  You know, prostate cancer may be there, but I hope you keep going and that science stays with you

Ralph Wozniak:

Thanks very much.

Andrew Schorr:

Thank you so much for sharing. All the best.  Andrew Schorr with Ralph Wozniak, a man who has been living many years with advanced prostate cancer, and his doctors and the treatments have helped him live a full life. And we hope that continues for a long time.

Remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Empowerment Network are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

[/toggle]

[/accordion]