While the healthcare industry has attempted a more patient-centric approach over the last 20 years, consumers today demand even more from companies, led in large part by the transformation of traditional retail consumer experiences, such as Amazon and Uber. As a result, better patient outcomes are starting to become expected rather than just wished or hoped for.
But while attempting a patient-centered approach, patient centricity has become an overused industry catchphrase that belies the healthcare industry’s failure to prioritize easier access to patient data to improve patient engagement and drive better outcomes.
Patient empowerment lies right at the heart of the patient-centric movement where consumers are starting to take back control of their health data and, with it, a far more active role in their healthcare decision-making.
“We are entering an era of ‘patient-centered medicine in which patients and their care partners participate actively in decision-making and priority-setting about all aspects of health care,” said Nina Hunter, the FDA’s former Deputy Director for Medical Programs. “Americans are becoming increasingly active consumers of health care, making choices about their doctors, diagnostics, treatments, and healthcare experiences rather than simply allowing health care providers to make the decisions for them.”
The biggest challenge for the healthcare industry is the overwhelming complexity of the patient experience and the fragmented nature of patient data that requires tracking a panoply of different symptoms, treatments, labs, diagnostics, and appointments.
Single Point of Data Access
Undergoing any complex treatment regimen in the U.S. healthcare system typically involves navigating multiple clinicians, caregivers, and treatment regimens – most of which are disconnected. As a result, patient data is very scattered and divergent as the network and treatment visits grow. In addition, patients dealing with caregivers lying outside of our care system or other countries expands.
But along with any complex diagnosis comes emotional challenges as well, including stress, anxiety, and fear that can impact a patient’s memory of their treatment record. Patients starting to take control of their health data can monitor from a single, centralized location to readily share their entire health histories, streamlining the process when visiting practitioners on their team to ensure they do not leave out important details.
Dangers and Costs of Fragmentation
Despite the industry’s changing view that patients must have access to their data, most patients still leave their health data in the hands of their providers.
A recent GAO study highlighted the dangers and costs of fragmented patient health data and the barriers that inaccurately matched records present to providers. For example, more than half of all patients found that their medical information and history were incomplete or missing when they arrived at their doctor’s office. When this happens, doctors then rely upon patients to fill in the gaps, made easier only if patients have easier access to their health data.
Worse yet, in critical care scenarios, where acutely ill patients move from one hospital to another, records sent with patients are usually incomplete, leaving physicians at the receiving hospital waiting for updates on pending results under life-threatening circumstances. In addition, on weekends, when medical records offices are closed, health data is virtually impossible to obtain promptly.
Fragmentation not only compromises the care patients receive but also dramatically increases costs. For example, a study from Boston Children’s Hospital estimated that one in three patients received duplicate tests because of fragmented health records, an eye-popping view of the staggering waste that data fragmentation creates.
Caregiver & Provider Benefits
Consolidated patient data allows caregivers to collaborate more effectively with any doctor or staff member, providing everyone with access to the same information. In addition, when patients transfer between different care teams and move to other locations, consolidated patient data will eliminate dangerous and costly duplication of effort while ensuring continuity of care.
Consolidated patient data also provides a better framework for value-based care models designed to reduce costs, drive better outcomes, and help providers operate more efficiently.
Better Decision Making and Improved Patient Engagement
Patients who control their health data are a critical component of active participation in their health care journeys. In addition, having control helps to promote meaningful interactions between both parties and improve the dialogue between patient and caregiver about your physical and mental health in essential areas that are not included in medical or electronic health records.
When diagnosed with a chronic condition, patients will often experiment with various medication options, creating a barrier to better health outcomes. Actively tracking symptoms, side effects, feelings, and experiences with different treatment options give the patient more control to make informed decisions when looking for the best treatment options.
Patients who actively participate in decision-making with their health care teams experience better treatment outcomes and a better quality of life, all made possible by patients and their caregivers with greater control of their health data.
Becoming more engaged with your health data can directly help improve both your physical and mental health outcomes. For example, a study published in the Journal of Pain Research showed that patients with lower back pain and less control over their health, and lower engagement overall, had a greater chance of feeling depressed
Health Data Control: Critical to Your Wellness
Whether newly diagnosed or currently living with a chronic condition, the treatment experience can become physically and emotionally exhausting for both patient and caregiver.
Knowing that you have all your health information in one place, easier accessibility, and a proactive approach will save you time, ease the process, and make you the driver of your healthcare journey. Instead of gathering information, you can spend your time engaging, interacting, and participating with your healthcare team instead of being a third-party observer to your healthcare journey.
Power of Crowdsourcing
As control of health data migrates from being exclusively controlled by medical providers and into the hands of patients and their caregivers, patients have the flexibility, independence, and freedom to share it as they see fit. Health data control empowers patients to do their own research and, in certain cases, even provides access to a larger community of patients and caregivers and the promise and power of crowdsourcing, one of the greatest promises in healthcare today. Patients and caregivers who share similar conditions are armed with advice and shared experiences with incredibly valuable information that can serve their respective patient communities.
Data Liberation – A Starting Point
Even with the movement toward health data liberation growing, the gap between theory and practical application in driving healthcare change is still formidable. Data liberation won’t be enough, in and of itself, to meaningfully transform our healthcare experiences. Patients will still need help organizing and interpreting data relative to their medical histories, scientific literature, and health care resources available to them.
Despite the unpredictability of innovation and reliance upon a system with competing stakeholders and misaligned incentives, taking control and personal responsibility for our health data might be the most critical part of meaningful, lasting change for each of our health journeys.