As we explore how innovation and advanced technologies are
transforming how clinical research is conducted, it is important to
consider the impact on — and experiences of — all stakeholders. In this
blog, we will talk with a patient and get their perspective on the role
of technology in their healthcare journey.
Cathy Molohan is a successful businesswoman. She co-founded
EnglishBusiness in 1997 in response to the need for global companies to
communicate in multiple languages. The company has grown into a leader
in corporate language education, training and translation. After being
diagnosed with Parkinson’s Disease at an age much younger than usual (60
years old is the average age of onset), Cathy dedicated herself to
advocacy for Parkinson’s patients and is now Director of International
Relations for the Berlin based Yuvedo Foundation. She also speaks at
conferences all over the world, providing her unique patient’s
perspective on the disease and what is needed to improve patient quality
of life and, one day, find a cure.
Q: Cathy, thanks for talking with us. Can you talk a little bit about your personal experiences with technology in healthcare?
A: There have been many, including both technology as a therapy as
well as technology that helps to keep me on track with my treatment
program. The technology that has made the biggest difference for me,
personally, has been Deep Brain Stimulation (DBS). It has been the most
effective solution for easing tremors and other symptoms for me. But
different applications that help to track my symptoms and send updates
to my care team have been extremely helpful. For example, you can’t fool
an app every day! During in-person visits with neurologists, they will
typically spend time assessing symptoms, like tremors. These visits
might take place only once every six months or so, and are still very
subjective, depending largely on what’s seen at that moment. With
tracking apps, a care team gets frequent updates about my tremors, what
they’re doing, and how they’ve changed. Ideally, this information is
linked to a day-to-day barometer on aspects such as sport, stress
levels, nutrition etc.
Q: How has technology changed how you interact with your care providers?
A: I think it makes our interactions more valuable. Whether it’s an appointment at the doctor’s office or a televisit, when we talk it’s less about catching up and more about dealing with what’s happening at that moment and planning for the future. Because, through various applications, my doctors can already have a lot of information about what’s been going on with my symptoms – are tremors improved, etc. So they don’t need to spend as much time asking how I’ve been doing. At the moment, I still need to bring that information along on the day, however. Ideally, in the future, they will receive the data beforehand so that they already know these details.
Q: What do patients need from technology to make it truly effective — either in clinical care or clinical research?
A: It has to be easy to use. If it takes too long to learn how to use
some device or application, if it’s too complicated or if it’s
uncomfortable, many patients are going to give up on it fairly quickly.
So ease of use is a plus. It’s also important to educate patients and
really get them on board — that way, even if the learning process isn’t
as easy as it could be, you can still get patients committed. Just talk
to us about why it is needed and what will be achieved by using the
technology. Tell us how it will help us, and with clinical trials, how
it will help others. In other words, it’s all about communication.
Q: What are some other keys to effective implementations of technologies with patients?
A: I think there could be a better understanding of how widespread
the training needs to be. It’s very helpful for patients to know how to
operate various apps or even medical devices, but many people have
caregivers or even teams of caregivers. These people, who can be
spouses, adult children, siblings, or visiting nurses, they all need to
know how to navigate these technologies as well.
Additionally, we in Europe are very concerned about data privacy. So
any new technology someone is looking to implement, just understand that
patients need to be informed regarding what’s being done to keep their
data secure.
Q: As a Parkinson’s Disease patient advocate, what are your thoughts
on the current state of clinical research around the disease?
A: I do wish there were better access to Parkinson’s clinical trials, particularly for women. I’ve found very little research on how women, specifically, are affected by Parkinson’s. I think this might be a gap in research and perhaps an opportunity for new discoveries. I know that a big frustration for many with Parkinson’s Disease is how long studies take to bear fruit. So I would love to see more studies launched, particularly those that look at female patients. I think the people are out there — many that I’ve spoken to, that are keen to take more risks and participate in studies if it means bringing life-changing therapies to the public more quickly.
For more information on Parkinson’s Disease, visit www.parkinson.org. To join the community, visit pdavengers.com. For more information on AiCure and its industry-leading, AI-driven solutions for patient monitoring and engagement in clinical research, visit www.aicure.com.
On April 28th, Cathy joined AiCure for a Real Talk Webinar on Real World Evidence: Harnessing Technology to Unlock Meaningful Patient Insights, hosted in partnership with uMotif. Click here to watch on-demand.
