Federal health reform legislation passed earlier this year significantly expands the primary care system in America. Through expansions to Medicaid and other health insurance reforms more people will have access to care, and many of them will receive their care at community health centers. Through support from the Community Health Centers Fund, federally qualified community health centers will see upwards of 40 million patients annually nationwide by 2015. Comparably, Medicaid will be expected to provide coverage for 76 million people by 2019 (60 million now + additional 16 million) and Medicare will cover 39 million people (expected to reach 78 million by 2030, when the baby boom generation is fully enrolled). Before the passage of both the Patient Protection and Affordable Care Act and the Health Care and Education Reconciliation Act, we had the American Recovery and Reinvestment Act, which included an unprecedented investment of $47 billion in health information technology initiatives (HITECH Act of 2009). This investment built upon work which began in 2007 out of the U.S. Office of the National Coordinator for Health Information Technology (ONC), in developing the Nationwide Health Information Network (NHIN).
So… what does this stuff mean for the rare disease community? Well, I bring this information up for two reasons:
(1) Within the rare disease community there has been much focus on orphan drugs, medical devices, medical foods, etc for once a diagnosis has been established. But what about the coordination of care for some of these complex illnesses? Even earlier, what about the complexity of even establishing a proper diagnosis, or a diagnosis at all?
There is a lot of national focus, for good reason, on patient-centered medical homes initiatives and primary care. Joint Principles of the Patient Centered Medical Home according to the Patient Centered Primary Care Collaborative of AAFP, AAP, ACP, AOA and others include things such as a personal physician, whole-person orientation, integrated care, and quality and safety. According to Federally Qualified Community Health Centers, “Medical homes are patient-centered, regular, and continuous sources of care, coordinated by a team of medical professionals committed to quality improvement.” Community health centers have been doing this very well since their inception more than 45 years ago:
“For over 40 years, health centers have brought affordable health care services to communities overlooked and underserved by mainstream medicine. Health center patients – who total over  million in all – are predominately low income, uninsured or publicly insured, and members of racial or ethnic minorities. In fact, health centers currently serve one in every five low income uninsured individuals, one in nine Medicaid beneficiaries, and one in four low income minorities. Most health centers have broadened the scope of conventional health care services to include dental and mental health services, as well as case management, transportation, translation, and outreach. Because they go above and beyond the role of a medical home, health centers may be more appropriately described as “health care homes.”
Questions for Patients:
Where did your case originate? [Health center, hospital, private practice?]
Where was the diagnosis made?
Who coordinates your care now? [Is there a primary care provider leading a team of doctors or are you trying to navigate through a fragmented network of providers on your own?]
(2) I’ve seen a lot of dialogue about rare disease registries and undiagnosed disorders registries, and there are some pros and cons to that design. One of the challenges perhaps being the more than 6,000 different rare disorders that our family and friends have… There are some small networks forming here and there, such as the NIH Rare Diseases Clinical Research Network (network of 19 distinctive consortia) and RemedyMD, Inc’s March launch of RegistryOnDemand™ (10 rare disease registries in production). I want to know about the efforts going on to connect to patient records, if there are any?
With significant number of the population being seen in the health center system, who tracks information through the Uniform Data System and various Medicaid/Medicare reporting mechanisms, there could be something here for us to look at. As State Health Information Exhanges, Regional Extension Centers, and Regional Health Information Organizations establish themselves and grow and continue to implement electronic health records, we can see the blueprint for the infrastructure the rare disease community needs being lay out. These exchanges, for example, allow a private practice or health center doc access records of tests and treatment if say a patient has an emergency room visit, for proper care follow-up and coordination.
Questions for Providers and HIT Specialists:
Advantages/Disadvantages of a single registry, a network of registries, etc?
Would this information be useful for provider education on, say, differential diagnosis?
Would the data in these records be useful to doctors trying to coordinate the care of a person with a rare disease?
Do current definitions of meaningful use consider the rare diease (ie care coordination, engage patients & families, improve public health, etc)?