A Shift in Health Care: Utilizing Clinical Research as a Care Option (CRAACO)
If you are sick, you will most likely visit your primary care doctor. If you have an illness that requires specialized care, you will most likely go to a doctor that was referred to you by your primary care. The medicine you take, the treatment you undergo, the knowledge that you learn, will most likely come from your team of doctors and maybe even by your health insurance company. Your team of doctors want the best care for you and your health insurance company wants to ensure there is appropriate value for services rendered. If the medicine prescribed for you works or your treatment is successful, you continue with your life as usual. If your medicine doesn’t work or your treatment wasn’t successful, chances are that neither you, your doctors nor your health insurance company will be aware that clinical research as health care is an option. With access to clinical trials, patients are gain access to the latest in research and innovation for their area of concern.
The Significance of Information Sharing and Patient Involvement in Clinical Research
Historically speaking, clinical research was only accessible by a patient if you
- had a doctor who was educated in clinical research and
- you could physically get yourself to the large, metropolitan city-hospital or the academic university that was participating in the clinical trial (you still needed to know that clinical research was an option which would most likely come from your doctor).
Barriers existed between the company developing the research product and providers capable of conducting research (outside of large research facilities) as well as the patients who participate in clinical trials. Information sharing methods like the internet, email, and social media had yet to be invented. Still, even with the plethora of information sharing and social media activities available today, there remains a barrier between the research needed to move the drug or device to the market and the doctors, families, and patients who need to know about the clinical trials in order to participate.
Prior to the advent of the internet and mass information sharing, if you had the desire to access innovative, breakthrough medical advancements, you had to not only live near the clinical research site, but your physician also had to have access to and be willing to share clinical trial information in your area of concern.
In today’s constantly evolving social-media and information sharing environment, we are beginning to see a change in the conversation around clinical trials. Patients and loved ones now have the ability to access information about clinical research trials and the research centers involved. Simultaneously, recruitment for clinical trials is extending out from the large city-hospitals and universities and into doctors’ offices. Drug and device companies are utilizing social media to advertise and recruit patients for their clinical trials. With the rate of information sharing steadily increasing, it will only become easier to learn about and participate in clinical research. With increasing patient knowledge, it will become more natural to have the conversation with your doctor about clinical research as a care option for you.
Accessing Clinical Research Trials as a Care Option
Even with increased use of information sharing via the internet, social media, etc., most of us remain oblivious to the availability of clinical research and how it could be utilized as a care option. A national public opinion survey in 2017 stated that 86% of Americans think a discussion about clinical trials should be a routine part of standard care. This number confirms the barrier discussed above – a lack of communication between the clinical research that needs to happen and the patients that need to receive the care. Even though information sharing is increasing, and patients are more knowledgeable about their own health care, there remains a gap in communication between care provider and patient.
Information seekers have online access to a variety of personal data: Log into your health insurance company’s website to review your medical claims or log onto your doctor office’s portal to monitor your lab results or other health records. For the clinical research information seeker, the internet can also be used to simply search for a clinical trial based on your medical condition, as well as a search for a clinical research center near your local community.
TrialScout is a web-based, online platform that allows anyone (patients, loved ones, and care providers) to search for clinical trials and/or clinical research centers that are testing new, breakthrough treatments or devices for the medical condition you are concerned with. Having the ability to generate search results that are easy to read helps open the discussion of clinical research as a care option between the care provider and patient. Patients now have the opportunity to become more informed and know the right questions to ask their health care provider before volunteering to participate in a clinical trial.
Changing the Public’s Perception of Clinical Trials
In 2017, 37% of Americans say they were ‘very likely’ to participate in a clinical trial if their doctor recommended, an 11% increase from 2013. Information sharing has re-invented how patients see their relationship with the drug and device development industry. Typically, the public has viewed clinical research as a risky decision to participate in. However, the perception toward clinical research is now experiencing a shift as it becomes more apparent that clinical research should be considered as a care option, and is more of a necessity to further the development of treatments. Clinical research can be used and viewed as an extension of one’s current health care plan. Especially for patients who suffer from chronic disease or find themselves in a palliative care treatment plan. The medicines that are currently FDA approved and out on the pharmacy shelves may not be the best option for a patient. By participating in a clinical trial, they potential have access to more treatment options that may have better results.
Advocacy groups are a useful resource for patients seeking an alternative treatment to their current medical health program. Take the Michael J. Fox Foundation for Parkinson’s Disease – the website advocates for patients through its “Fox Trial Finder.” For those undergoing a palliative treatment care plan, the National Institute of Health runs a program for supportive and palliative care research. Clinical research as a care option is engaging, connected, and accessible. Clinical research is a great way to have access to different types of care options and new medicines
As the age of online information sharing increases, so too will the availability of clinical research as a care option. Through channels such as social media, the public will become more informed about clinical research and the availability of clinical trials in their area and how clinical research can be used as a care option.
Written by Amy Rochford
Amy is a data analyst and self-described jack-of-all-trades at TrialScout. Amy is a transplant who moved to Buffalo three years ago, bringing experience from multiple industries including clinical trial operations, physician office management, and travel and tourism management. Amy’s time is consumed by her husband, two young boys, two dogs, and many foster dogs.