Defining Personalized Health Care

As a result of the announcement of the Precision Healthcare Initiative by President Obama at the end of January, innovative structures for improving healthcare are in the spotlight.  In the media, there has been a lot of conversation about healthcare in the United States and what kind of changes can be made to improve quality and access to care. Buzzword phrases like prospective healthcare, precision medicine and personalized medicine have been used interchangeably; however, they have distinct meanings. These terms share a common thread in that they promote individualized planning and treatment, but recognizing the differences between them and understanding related terms is important. This post seeks to remedy confusion and provide clarification.

Precision healthcare is primarily focused on improving health outcomes through genomics. Genome sequencing allows for better understanding of which genes or combination of genes lead to onset of diseases, and which genes can provide resiliency against diseases. Based on a multi-level analysis of genes and other data, precision healthcare allows physicians and pharmaceutical companies to strengthen their understanding of gene-environment interactions and understand how to treat particular diseases given a set of mutations Precision healthcare also emphasizes the importance of diagnostic testing, as this allows doctors to identify the best treatment for an individual’s particular disease. Precision medicine is already at work in treatment of cancer and fibromyalgia.

Personalized healthcare, which is the focus of this Center, rallies around four core tenets. Prospective healthcare promotes 4Ps: predictive, preventive, patient engagement, and personalized care. In integrating these four concepts, personalized healthcare creates a model that emphasizes long range planning rather than costly reactionary care. Chronic, preventable diseases make up the bulk of spending on American healthcare provision. Personalized healthcare seeks to remedy spending on chronic care by encouraging healthy behavior and planning. It emphasizes doctors spending more time with their patients, looking at their health history, and identifying disease risk early-on. The physician and patient work together to create a health plan, and the patient is expected to engage in his/her own health management. Studies using this more prospective approach at Duke have shown that this model improves health outcomes. 

Personalized medicine falls under the umbrella of personalized healthcare but the terms are unique. Personalized medicine is rooted in therapies that are tailored to fit an individual based on their genetic, genomic, and clinical information. Armed with this information, accurate predictions can be made about a person's vulnerability to particular diseases and understanding their responses. In addition, gene based therapies or interventions can be customized for the individual and their genetic susceptibilities. Despite these differences, personalized medicine and the broader personalized health care movement are upon us and has the potential to shift health care to a more proactive model rooted in preventive medicine and patient engagement. 

Phoebe Long, is a senior at  Duke University and a research intern at Duke’s Center for Research on Personalized Health Care.

Looking Abroad for Examples of a More Personalized Approach to Health Care

In the current healthcare system, there is a lack of time for quality education, communication, and follow-up from the physician. The lack of patient engagement is exacerbated by a fragmented healthcare system where insurance coverage is tied to employment and patients must change providers when they change jobs.

The United Kingdom has been one of most successful in diabetes management out of all developed countries. This achievement is very much a result of a single-payer insurance system and strong patient engagement. Under the National Health System (NHS), health insurance is provided by a single-payer – the government - and funded by taxes. Patients are assigned to physicians to maintain the continuity of care. Because Government insurance also eliminates copays and caps on clinic visits, which allow patients to get more frequent preventive care. A large supply of nurses facilitates the sharing of health decisions with the patients through house visits and group education. For example, diabetes-trained nurses help engage the patients in self-care through educational and self-management courses like the Diabetes Education and Self-Management for Ongoing and Diagnosed (DESMOND) or the Dose Adjustment For Normal Eating (DAFNE). Community matrons or nurses can provide in-home continuing care to chronic patients, and help with physical and psychosocial wellbeing, which in turn reduces visits to the physician or hospital admission.

Personalized healthcare, an approach being developed at Duke University, focuses on patient-centered healthcare, personalized health planning (PHP), and patient engagement. Patients are given the opportunity to engage with their own health by identifying areas in their life where they are motivated to make changes for their health. In initial visits, physicians assess the patients’ risk including family history, genetic markers, lifestyle habits, and other biometric data during the appointment. Then, the physician and patient work to create a timeline for health improvement. Through the time frame of the plan, health coaches and nurses monitor the patients’ progress and help them meet their health goals. It promotes the use of health coaches and nurses to provide education, support, and outcome tracking for the patients, similar to the United Kingdom approach. Shared Medical Appointments (SMA) allow patients with the same diagnosis to receive group education from Medical Health Technicians, discuss their goals with each other, receive psychosocial support, and access a medical team together to improve the efficiency of physician visits.

While we are working on developing more effective approaches to chronic disease management, we also need to develop better infrastructure to support patient engagement. The central ideas of personalized healthcare planning – intensifying the patient’s role in health management, establishing a personalized health plan, and tracking the execution of health goals – guide us in the right direction. The United Kingdom should serve as a reference for us as we integrate prospective healthcare into our healthcare system and begin to focus on preventive health.

Shelley Chen, is a senior at  Duke University and a research intern at Duke’s Center for Research on Personalized Health Care.

The Need for An Improved Electronic Health Record

Effective October 1, 2012, the Affordable Care Act mandated that health plans begin the process of adopting systems for the electronic exchange of health information. From 2006 to 2013, the adoption of basic Electronic Medical Record systems by office-based physicians increased by 37% according to a national survey carried out by the Center for Disease Control’s National Center for Health Statistics.

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The pros and cons of EMRs are varied; some physicians say that implementing Electronic Health Record (EHR) Systems is costly, time consuming, and disrupts the doctor-patient relationship. Others maintain that once providers adjust and incorporate EMRs into their daily workflow, they will reduce paperwork, cut costs, and improve the way we care for patients. Regardless of complaints about EHR systems, physicians and hospitals are adopting them, and it is time we worked to improve their sustainability and efficacy within the health space.

Challenges facing EHR systems must be addressed if meaningful use standards are to be met and patients are to benefit. First, we must find ways to increase patient trust in the security of their health information. If individuals do not believe that their medical records are safe, they will not be motivated to access or share them. Related to this, patients must be educated in all of the ways they can use their EHR, whether that be through sharing their information to further research, tracking personal health goal progress, receiving clinical reminders, or asking questions through patient portals. EHR systems do nothing if patients do not take advantage of their expansive capabilities to connect them with their physicians and their health information.

Physician input is integral in determining ways in which EHRs can be more clinically useful. Physician complaints of EHRs include difficulty taking notes on patient concerns, a confusing checkbox system, and an overall non-user friendly interface. Though the platforms for EHR systems may be successful in transferring and storing records, the way EHRs are used in daily appointments needs to be re-assessed.

Finally, EHR data input systems must be revamped so that personalized health planning is the fundamental backbone of the EHR. Patient goals and questions about their health should be some of the first things a physician sees upon opening the EMR, and the priority to address during the appointment. Inputting this information should fit seamlessly into the clinical workflow in order to avoid one of the most common complains of electronic health record systems; that they reduce the clinical encounter to a physician typing into a computer.

            While Accountable Care Organizations continue to form and EHR systems are consolidated and improved, hospitals and health systems should set Health Information Technology goals that continue to address the major current issues with EHRs. The potential for positive impact of the EHR in our research, patient appointments, and overall health system in the future highlights the need to fix problems with the technology as soon as possible.

Caroline Meade, is a senior at  Duke University and a research intern at Duke’s Center for Research on Personalized Health Care.