By REED HARTLEY, Executive Director, Thought Leadership & Innovation Foundation (TLI)
While technology makes it possible to generate and collect unprecedented amounts of data, aggregating, analyzing and managing that data in a systematic way that informs decision-making remains a challenge for many providers and healthcare organizations. These complex analyses require the development and implementation of artificially intelligent (AI) algorithms and machine learning methods to achieve accurate, automated decision-making at a speed which manual human analysis is incapable of achieving. As a result, big data analysis has the potential to significantly improve patient outcomes when provided to researchers and clinicians.
Consider this example of how data science is building a limb loss and preservation registry to support the amputee community, producing outcomes measurement and evaluations across diverse patient populations. Over 2 million patients in the United States face the challenges of limb loss in their work, daily life and specialized healthcare needs. This project enables data analysis to advance better outcomes for patients whose lives have been forever changed by losing a limb. Whether the cause is diabetes, vascular disease, childhood cancer, surgery, accidents or military combat, the project provides a way to help each person receive the best available rehabilitation and re-integration into daily activities.
Development of Limb Loss and Preservation Registry
In 2019, several international organizations and colleagues in biomechanics research around the world engaged the Mayo Clinic, with support from the Thought Leadership & Innovation Foundation, a nonprofit organization with specialized data analytics capabilities, to develop the first national registry of people who have lost limbs and had preservation procedures to include both adults and children. The Limb Loss and Preservation Registry (Registry), funded with Federal funds from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Department of Health and Human Services, will serve as the catalyst for improving prostheses, treatment and rehabilitation activities for this population. The Registry will address this substantial public health knowledge gap with information housed in this database that will be vital to improving surgeries, refining rehabilitation approaches and guiding the development of devices for people with limb loss.
The information will also be made available to researchers studying the underlying medical conditions that contribute to limb loss, such as diabetes and vascular disease, enabling them to analyze the data by age, gender and type of limb loss or preservation surgery. Scientists with expertise in civilian and military limb loss and limb preservation have worked with TLI for many years to standardize, measure and report patient outcomes data. This research will support evidence-based decision-making, enhance healthcare delivery and establish best practices to disseminate for reintegration strategies following neuro-musculoskeletal injury.
Having the ability to examine health disparities, whether it’s a racial, gender, geographic or payer disparity, is important with regards to identifying gaps in public health. For instance, obesity, a common precursor to diabetes and lower limb loss, shows geographic disparities across the United States. The data will support decision-making for long-term care of these patients and enhance their functionality and quality of life.
Registry Status
The Registry will become the first comprehensive repository of statistical data about limb loss ever assembled. The potential benefits for amputees are enormous, as the trove of information will yield a whole range of new insights about amputees’ quality of life, health status, mobility, financial status and other indicators. That knowledge should lead to better solutions for those living with limb loss.
The project will overcome the challenges of collecting data from a myriad of sources. For example, about 30% of patients with lower-extremity amputations get a prosthesis, which means that information from that source alone lacks the 70% who do not get a prosthesis. For this reason, the data experts broadened their sources to include: 1) individuals who have had an amputation or a limb-preservation procedure, 2) source of hardware and 3) outcomes. To reach the missing 70%, the team will work with patients who had an amputation to provide outcomes information via the Registry’s patient portal.
To incent individuals to participate, the Registry will provide feedback on benchmarks relative to people of the same age, gender and type of amputation and provide comparative insight to help them understand their treatment options. Ideally, the individuals will enter their data regularly to see if their outcomes have improved, which will inform them about the effectiveness of their care decisions. The team will also develop the dashboards for the Registry’s patient portal to provide powerful insights for patients.
Standardized and measurable patient outcomes data is of interest to clinicians, payers, caregivers, prosthetic designers, researchers and the federal government to develop policies about healthcare delivery and best practices for this patient population. Likewise, caregivers, researchers, policymakers and payers all require standardized data to make decisions, while understanding patient-centric outcomes on a national scale would allow policymakers to develop best practices and optimize care for people with limb loss.
An advisory board that includes prosthetic manufacturers’ research investigators, patients and insurance providers helps the project identify every type of information that should be gleaned from the data. Because it’s a multi-stakeholder project, the Registry gathers their input for designing and analyzing information for the benefit of all stakeholders.
Building Trusted Data Systems
Multiple projects conducted by TLI have shown that it is vitally important to turn data into meaningful information for clinicians. The acquisition, management and integration of information requires the highest level of data analysis in a way that can improve performance and support the advancement of healthcare by enhancing outcomes measurement.
The best health data analytics partners have the ability to find drivers of change, create prototyping and pilot programs and focus on systemic, complex challenges in a way that ultimately change lives in a tangible way. They are also able to integrate the human dimension by building trusted data systems with an in-depth knowledge of the technologies needed and how they can be made to work cooperatively—with the understanding that data alone does not equate with information that can be readily put into practice in a clinical setting.
Data experts must have hands-on experience designing and building systems on a high-performing scalable cloud architecture that enables a flow of data from systems, nimble web-based platforms and patient-facing mobile apps. This includes validation and quality checking of the ingestion of the data from various sources to ensure that it can be transformed into accessible and useable diagnostic information.
Individuals who experience limb loss must adapt to new and challenging circumstances, often marked by grief, impact on body image and changes in self-confidence. They need support to help them carry on with their lives and move past these challenges. The Registry and its wealth of information can provide the kind of high-quality information that today’s healthcare decision-makers need to address extremely complex healthcare problems, such as those associated with limb loss. With these insights and a greater understanding of the issues, healthcare teams can help to improve care and enhance quality of life for those individuals who are struggling with such loss.
About TLI
The Thought Leadership and Innovation Foundation (TLI) is a not-for-profit organization that works at the nexus of science, technology and public health, innovating for superior prevention, treatment and outcomes for those facing life-altering medical diagnoses. TLI helps patients across the country and around the world find better healthcare outcomes. Visit www.thoughtfoundation.org and follow us on Twitter and LinkedIn. Reed Hartley serves as Executive Director, TLI. Email: reed.hartley@thoughtfoundation.org
