Contributed Commentary by Dave deBronkart

December 11, 2018 | As an activist patient for patient empowerment, I know that we exist in a time where medical information can be complex, difficult to decipher and comprehend. In speaking with individuals in health professions, I often hear concerns such as, “How can patients without scientific or medical training be truly engaged in their healthcare?” Understanding our own health takes more effort than simply assessing how we feel; for people with a tricky problem, it requires us to find, digest, and understand the complexities around our own medical information. But first, we need access to that information. New and innovative approaches in patient engagement are working to make these activities possible.

It stands to reason that people perform better at tasks when they are more informed about the task overall. This is equally applicable to how patients participate and engage with their healthcare, from participating in clinical trials and annual visits, to playing an active role in their diagnoses and treatment plans. Access to and transparency around personal health data and information remains one of the biggest hurdles to allowing patients the opportunity to understand diagnoses, therapies, and treatment options and ultimately engage fully in their healthcare.

Until recently, the care and treatment of patients was left entirely in the hands of health professionals—individuals who went through years of schooling to understand medicine and how drugs perform and interact with the body. Today, with an increased focus on broad transparency in the medical industry, coupled with the introduction of new digital health technologies, the traditional clinical care methods and patient education are in a state of true transformation. We are entering a period of digitalization with an increased focus on allowing patients more access to information to help them make decisions about their health.  As a result, the industry is experiencing a shift toward open lines of communication where the patient is not just involved but engaged.

The U.S. Food and Drug Administration (FDA) was initially created as a consumer protection organization, to ensure that patients—not profits—were the top priority in the burgeoning health care market. Its role was, and remains today, to determine efficacy and safety: identifying if a medication had a legitimate mechanism of action and what its side effects might be. In the past, the average patient wouldn’t necessarily know to ask about this information and evaluate it before making decisions. However, this is changing as patients are becoming active consumers of healthcare and not just entities along for the ride.

For over a decade, the concept of “healthcare consumerism” has been discussed, as the country was introduced to electronic medical records (EMRs), telehealth systems, and social media platforms that connect patient communities. Patients today have the ability to find valuable information—including hospital readmission rates, a physician’s experience performing a specific procedure and other patients’ feedback—that directly influences the decisions they make on their health. However, there is still more that can be done.

My own experiences as a cancer survivor highlighted what was available to me as a consumer of complex health care, and how much information I was not able to easily access upon my initial diagnosis. Following a diagnosis of Stage IV renal cell carcinoma, my provider directed me to an online patient community where I learned about an available treatment option, which eventually led me into an ongoing clinical trial for a new protocol of the drug.

The ability to connect with this patient community and have a support system that listened to and answered my questions based on their experiences, both with the disease and treatment, helped save my life. It also made me wonder—“What if I hadn’t armed myself with the information I collected from my providers and fellow patients?” I learned of possible side-effects and what to expect during treatment from my fellow patients, not just from the clinicians running the trial. That information ultimately prepared me for what I experienced and allowed me to understand what was happening to my body, knowing all along what the possibilities were. Without this information, I would have been disempowered, though I wouldn’t have known it at the time.

Promising advancements in patient engagement and communication include networked access to information in a streamlined and transparent manner such as patient portals where doctor visits, lab work and feedback are posted for patients to view their own progress and interact directly with health professionals between visits. OpenNotes, an international movement to make healthcare more transparent, is another promising advancement promoting thorough patient education and engagement. Separately, the U.S. government is in the process of requiring all entities within the pharmaceutical supply chain to be able to track and trace medications from the manufacturer to the pharmacy, hospital or point of dispense to prevent tampering and counterfeit drugs, and to make data related to drugs available upstream and downstream.

More promising is that the pharmaceutical supply chain is starting to include the patient in different ways, so consumers of medications will be able to understand the history of the drugs they are using. But there’s always a next step. The next step is to involve patients in the conversation, in the form of a patient-centric supply chain, where sound information and support systems can exist to help patients play an active role in their own care management. This is where patients will have the ability to provide real feedback and information back up the supply chain to the pharmaceutical company and contribute their experiences as invested stakeholders to the development of therapeutics.

Recently, I attended a the FutureLink conference where I had the opportunity to speak with leaders across the life sciences including pharmaceutical companies, clinical care leaders, and industry organizations about the importance of the patient perspective in drug development and clinical care. By expanding information sharing to patients, the ultimate consumers of health care, the final gap within the drug supply chain will be closed.

Dave deBronkart is a former cancer patient who is now focused on personalized medicine and making sure the patient has a voice in their healthcare. His Tedx Talk “Let Patients Help” was for years in the top of the most-watched TED talks of all time. He can be reached at priority@epatientdave.com.