clinical trials, Healthcare

The Impact of a Trial

This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will raise much needed awareness about the power of breakthrough research.

“No, don’t look at that trial. People have been dying in it. I don’t think it’s a good fit for you.” Those were the words that I was speaking to my mother after she was diagnosed with Multiple Sclerosis when I was in High School. It wasn’t something that you would think a teenager would have cared about that much. But I did. This was MY mother that was being ravaged by this disease and if there was something that I could do, then it was going to happen.

Eventually we found a trial that she fit the criteria for. After discussing with her neurologist in depth, she enrolled. It felt like hundreds of signatures as she signed form after form after form. We took home our copies and read through everything. The risks, benefits, potential harms, purposes and phases of the trial were all on these papers. She was entering into a study with high dose corticosteroids once a month. Well, she was enrolling but didn’t know if she would be receiving the medication or the placebo.

The study lasted for two years and she was convinced that she was in the test group and not the placebo group. There was a little more energy in her step; I couldn’t tell you if it was the placebo effect, which can be significant in studies. All that I knew for certain was that something was different.

The trial ended and by the time results of the study were released, I was in college pursuing a nursing degree. Little did I know that it was just the beginning of my experiences with clinical trials, studies and observational experiments. Within years it was me who was looking for trials. The scales had tipped the other direction.

In 2014, dysautonomia became the ‘it’ word around our home. Within days my nursing career was something of the past. The unknown factor and “what-ifs” were something that kept me up at night. I was so uncertain about how to proceed. Health care professionals aren’t supposed to get sick; okay that’s just what we think. We just make worse patients that the public because we don’t take the same advice we would give to someone we were caring for.

Even scarier in this new life of mine, was the fact that despite all the resources I had at my fingertips, there were very few regarding my condition. Any research studies only had twenty to thirty participants maximum and it didn’t look like there were any trials going on.

Fast forward to today and dysautonomia is still the elephant living in our house, but I’ve accepted it isn’t going to smother me. I’ve armed myself with information and have many new resources, including those for clinical trials. My neurologist has me listed in several registries and I’m part of an observational study. I was the first person that was enrolled. It took time and patience to get to this stage, one of acceptance and one of hope. This isn’t the end, it is just the beginning of so many more advancements and opportunities.

The patient empowerment era has been gaining traction and moving swiftly. Thinking back to even two years ago is something stark in contrast to today. We are in the age where numerous opportunities for clinical trials exist. It is an option that should be made available to every patient, every time. Empowering them is a must.

The elephant in my house becomes a little smaller with each bit of knowledge that I gain. I would imagine that it may be the same case for you.

If we can actually decrease the failure rate from nine out of 10 drugs failing in clinical trials and instead have seven out of 10 instead failing, that is a major victory for drug discovery and for people having better therapy.  ~Anne Wojcicki

lab tubes


Stories That Impact Healthcare

There are health care conferences hundreds of times throughout the year in the United States and thousands internationally. What is the one things missing from 99% of those conferences? Patients.

If it weren’t for patients, how would a hospital be able to stay open? How would doctor offices maintain staff? As many times as, we may feel like everything in medicine is going against us, we are the reason that it exists.

How can we make a difference? Stories. Stories make more impact than a diagnosis. People remember stories, they don’t remember medical record numbers.

This Thursday on 5/17/2018, there is a conference that involves patients. It is people telling stories about how they went around the obstacles and made a difference despite the odds and despite not receiving care that was adequate.

Don’t get me wrong, I’m a nurse and I loved my job each day. I’ll never regret my career decision. However, I’m also a patient and there are a lot of things that need to change. Seeing things from both sides of the fence makes many issues even more urgent.

If you think there is something wrong with our health care system and wish somebody would listen, this is the conference for you. It’s called ‘What’s the Fix.’ You’ll love this, the theme: people kicking the hell out of health care.

You can still register and attend online and it’s free. My blog will also have the Twitter stream from the conference, so you can see everything that people are saying. If I caught your interest at all then wander over to the following website and sign up.

Yellow Light Bulb


Quilting Medicine

Each day as I gaze across the room, I smile at a picture of a quilt. That may be seemingly simple, but to me it is beauty in every meaning of the word. The following quote is next to the picture.

“Families are like quilts,

lives pieced together,

stitched with smiles and tears,

colored with memories,

and bound with love”

That quote may seem simple to some but is so meaningful on a lot of levels for me. A family isn’t just born. Everyone has a different relationship, interacts with others slightly different and naturally finds that perfect mix of people. Events in our lives change the shape of families but love always takes precedence.

As someone who quilts, truer words have never been written. There is something about how precise each cut of fabric must be. The precision of sewing each seam and having a work of art come together right in front of your eyes.

The other day as I was working on a quilt, I was pondering the quote. It struck me how easily this could also be applied to healthcare and medicine. The precise cuts for each square or border can be compared to a surgeon making opening incisions for an operation.

Healthcare truly is a work of art. It may not seem like it many days, but a very large majority of the caregiver population, truly love the profession that they have chosen. I know that choosing nursing was something that I always wanted to do. There was never a doubt in my mind.

The process that takes place when a provider is assessing us, providing a treatment plan and follow-up recommendations can be compared to sewing a quilt together. All the pieces must be in place before it can be completed.

Many times, there are issues with our healthcare or health status and we are forced to take a step backwards or several. The same is done with a missed stitch or crooked seam on a quilt. Until the other day, I never had thought of healthcare this way. It is true though. Look at a quilt or blanket on your bed. The intricacies and character.

This takes us right back to “lives pieced together.” Every member of our family will eventually have an encounter with the healthcare community. Losing a portion of that quilt can be earth shattering. Then we are forced to pick up the pieces and move on, figuring out life once again.

quilt flowers