How Good Data Improves Patient Outcomes: Best Practices & Advice
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“Data improves patient outcomes because it is the key to understanding individual patient issues and whole populations. The insights we get from data are critical to understanding where patients are in their healthcare journey.”
Sandra Fenwick, MPH, Former CEO of Boston’s Children’s Hospital, Current Board Member at Patient Discovery
For more than 4,000 years, humans have been keeping medical records. Everything from examinations, treatment plans, outcomes, and follow-ups have been charted on papyrus, tablets, and ancient books. In more modern times, paper charts have been the gold standard till they were replaced with electronic health records (EHRs) in 2011. These records have served individually to care for individual patients and aggregately to inform decisions system wide.
“Data improves patient outcomes because it is the key to understanding individual patient issues and whole populations. The insights we get from data are critical to understanding where patients are in their healthcare journey,” says Sandra Fenwick, former CEO of Boston’s Children’s Hospital and current board member at Patient Discovery, a technology and data analytics solution for reducing disparities in care. In many cases, carefully analyzed data can help patients spend less time in the hospital, get better quicker, and receive care at a lower cost.
However, it can be challenging to manage the amount of data that is gathered every year: “The data, in many instances, is not standardized. It comes in various forms because we ask for it in various ways. We have to change the approach so that collection is standardized so that it can be packaged to tell the provider what they want to understand and the patient wants to convey,” says Fenwick. “If you can package it for broader populations, then you can use it to affect whole systems.”
To Fenwick, gathering good data is everything: “It’s truly a whole person approach. You need to look at how you treat a person in their environment outside of the clinic and not just inside one. That’s the direction we need to move in,” she says. However, gathering this data is not without effort. “It’s hard because it’s a whole new dimension to ask our providers to take on,” she adds.
Keep reading to learn about what constitutes good data, how to gather it, and make it usable.
Meet The Expert: Sandra Fenwick, MPH
During her 22-year tenure at Boston Children’s Hospital (BCH), which included serving as the chief executive officer from 2013 to 2021, Sandra Fenwick led a team of 20,000 people dedicated to improving and advancing health through life-changing work in clinical care, biomedical research, medical education, and community engagement.
Today, she serves as a member of the Board of Directors at Patient Discovery, where she strives to make a meaningful impact on patient outcomes by addressing social determinants of health. Her additional board commitments include serving on the Board of Directors of The Risk Management Foundation of the Harvard Medical Institutions, Inc, Harvard’s Wyss Institute for Biologically-inspired Engineering, and Teladoc Health, Inc. She holds a bachelor’s degree from Simmons College with distinction and a master’s in public health in health services administration from the University of Texas School of Public Health.
Collecting Good Data
For data to help improve patient outcomes, it has to be good data. To be considered good data, it has to be consistent, accurate, precise, and timely, which can be challenging: “The most important data comes directly from patients because that is the source of truth. It is not only the best data, but also the hardest to acquire,” shares Fenwick.
Until recently, physicians, nurses, researchers, and clinic staff have primarily gathered patient data. With the introduction of apps and healthcare portals, patients can now record and submit their own data directly to their care providers. By doing this, it is reducing barriers and transmitting more accurate data than ever: “We haven’t been capturing the right information. The question is, do we have the right data, or do we need additional data? Or do we need different data? Are we even asking it the right way to get at the root of what we’re trying to understand?” asks Fenwick.
“When we talk about health equity, health justice, and diversity, we need to recognize that we are not getting the barriers that patients face. We’re not getting at the complexity of their lives that influence adherence to treatment plans and therefore the outcomes.”
At Patient Discovery, Fenwick and her team are helping to gather some of the best data possible directly from patients: “We have incredibly rich data that we cannot find in any other way. The social determinant questions around food, housing, transportation, legal issues, affordability, and health literacy, help us see which patients understand or don’t understand the materials they’ve been given or the conversation they’ve had. We have clear insight into mental and behavioral health issues and substance abuse issues, too,” she shares. With this self-reported information, clinics, hospitals, and healthcare can make decisions that positively impact outcomes.
Making Data Useable
Good data is usable. Currently, there is too much data to sift through efficiently by an individual, so it needs to be aggregated so that it can inform decision makers about trends and needs. “Technology and data working together are critical. The healthcare system is in deep distress around this issue because providers’ efficiency is at its lowest level because of workflows and navigating EHRs. It’s a jungle for them,” says Fenwick. “Patients are frustrated because they keep getting asked the same questions repeatedly, and it’s never put in a place where providers can effectively act on it.”
The answer to the problem is reworking the way data is managed. “We are in a world where technology can help with not only the acquisition of this information, but also the storage, retrieval, analysis, and interpretation of it in a way that gets to the heart of what providers need, and patients want,” she says. “So the question is do you build your system, or do you look at an existing product or platform that is simple to use by the provider and the patient?”
Tools like Patient Discovery are doing precisely that: making good data easily accessible: “We’re working first in oncology. The complexity of both the treatments and patient lives directly impacts their engagement, satisfaction, and health outcomes. Before, patients felt their information wasn’t understood, individualized, and addressed. Now it is,” she says.
“We have developed a practical, proactive, and seamless tool for providers to acquire the data easily from patients in the privacy of their homes, where they feel more comfortable and can remember what their issues are. They can talk about the most sensitive and sometimes traumatic kinds of things that they need to describe and put them all in one place. It can be analyzed not only for trends, but you can look at whole populations or practices and track whether an intervention has been effective over time.”
By making the data usable and actionable, it is not only beneficial to healthcare providers but can then also be used to affect health outcomes on a larger scale. Public health, government agencies, researchers, biotechnology firms, and pharmaceutical companies can all benefit from readily accessible, searchable, and reliable data. This can lower the cost of many different kinds of care as well as the cost of medications. According to Fenwick, the ultimate goal is to ensure that this data reaches a place where it can be acted upon.
Privacy Concerns In Gathering And Using Patient Data
Gathering and using patient data has extensive privacy concerns: “Patient privacy is the number one job. Patient identification must be there so the right patient information can reach the correct provider. But then, all the rest of the identifiers need to be anonymized. Patients need to have confidence that if their information is going to be used beyond their direct relationship to their doctor, and there is no risk to them,” says Fenwick.
She continues, “It is important to aggregate this data to analyze it comprehensively because it will potentially help individuals and many other patients. We need to give them the confidence that when others are using data, be it policymakers or a commercial company, it is to have a better understanding for either themselves or more patients. There’s a lot of fear about data today. We ensure patients understand that whatever the system is using is safe and trusted.”
