In this blog, you will be seeing a lot about healthcare data—what it is, access to it, and how to use it effectively on the road to Affordable Health Care and Beyond for ALL Americans. The time for electronic (digital) healthcare data is here and the Internet has revolutionized the way both healthcare providers and patients can efficiently access and store data for better health care. Looking at the new doctor-patient relationship found in a previous blog post in greater detail, we see that the “data” contribution can be expanded into four categories: namely,
- Individual (patient) health records
- Educational information
- Evidence-based Clinical (Research) Data
- Financial Information
Healthcare Data 1: Individual (Patient) Health Records
Individual health records are a systematic documentation of a single patient’s medical history and care over time. In the United States, complete patient-centered records (Personal Health Records (PHRs)) are not collected by our government nor by any particular medical business. The closest Americans have to a central database for personal health records is found for veterans at the Department of Veterans Affair’s “MyHealtheVet”.
Patient health data includes your medical history, any relevant personal information, diagnoses, presence of chronic (long-lasting) health conditions (like asthma or diabetes), doctors’ consultation notes, medications, treatment plans, immunization dates, allergies, xrays, laboratory and test results, images (such as from biopsies, CT Scan, and MRI), hospital admission records, hospital discharge records (showing the results of treatment and whether any follow-up care is required). Individual health data can also be generated in the home (for example, weight, sugar and blood pressure measurements) as well from self-monitoring electronic devices. Your personal health record is your health “resume”. It is the story of how you are becoming “less healthy” with time.
Partial health records can be found in a number of different locations; original (paper) documents and Electronic Medical Records (EMRs) housed within individual healthcare businesses across the country, insurance companies, and the federal government (primarily at the Centers for Medicare & Medicaid Services (CMS)). With the passage of the HITECH Act of 2009, Electronic Health Records (EHRs), controlled and maintained by individual healthcare businesses across the country, have become available over the internet for sharing with patients and other healthcare providers for coordination of care (improved quality and reduction in over-treatment).
In the United States, individual healthcare data is collected by private insurance companies and government health programs (like Medicare and Medicaid) to increase efficiency and reduce costs within individual insurance plans and government programs. In other industrial countries, individual health records are used to improve individual and public health (to determine how well a particular healthcare provider is performing, to track the spread of, or risk factors for, a particular disease, and to determine relative effectiveness of treatments). When health records are used for public health, the privacy of the patient is protected.
Healthcare Data 2: Educational Information
Educational information found on the Internet has opened the world of healthcare to both the medical professional and the non-medical consumer. It is like having many encyclopedias and medical textbooks packaged for easy access from any Internet-connected computer (or other device) on demand any time of the day or night. For the non-medical consumer, this information has opened the door for improved “patient engagement”. Some of my favorite sites for general medical information include
- NICE Pathways— this patient-centered site is my favorite
- Patient— an independent health platform out of Great Britain
- NHS Choices–your health your choices from the National Health Service in Great Britain
- Mayo Clinic’s Patient Care and Health Information
This wealth of general healthcare data gives us a basic foundation for medical terminology, diagnosis pathways, and general human physiology. It helps us “talk the talk” of medical care. If one site becomes too technical, seek another site or go back to the browser to “decode” the medical jargon. “Plain language” descriptions in some information sites are particularly helpful to the non-medical consumer who wishes to “engage” in his/her health care. Easily accessible healthcare information helps us ask intelligent questions and absorb the answers with greater understanding when communicating with our healthcare practitioners. This educational information is not a substitute for medical consultation and should never be used to self-diagnose. We can research our particular illnesses and often point our healthcare providers to up-to-date information they might not be aware of.
Healthcare Data 3: Evidence-Based Clinical (Research) Data
Evidence-based clinical (research) data comes to us from systematic medical studies which are continually changing our treatments options for achieving the “best” patient outcome for a given condition or disease. You might see this healthcare data also called Comparative Effective Research data. New medical advances and treatments need to be continuously evaluated against current treatments for the delivery of the greatest healthcare value.
For a given medical condition or disease, evidence-based clinical studies and the statistical evaluation of a large number of individual studies (called meta-analysis) represents the collective knowledge from large groups of medical experts. This data can be disseminated to individual healthcare providers and their patients for application. In the United Kingdom, the National Institute for Health and Care Excellence (NICE) uses evidence-based data to arrive at constantly updated, nationally-applied guidelines.
In the United States, we rely on our individual healthcare practitioners to keep up-to-date with evidence-based clinical data for a risk-benefit evaluation that defines the care individual Americans receive. Not surprisingly, the gap between high quality, evidence-based care and actual care received by patients is disturbingly real (2011 Report to Congress: National Strategy for Quality Improvement in Health Care).
With the internet and access to evidence-based clinical data in a form that is easy to use (with Plain-English summaries), patients and the public now are empowered to “engage” in their own healthcare to contribute to bridging the gap that healthcare providers have failed to do alone.
Evidence-based clinical data used for guidelines can be found at
- Agency for Healthcare Research and Quality
- Cochrane Library–access to many reports requires subscription (available at universities and in the state of Wyoming to its residents)
The results from medical research studies comes to us from across the world. In the United States, funding (in 2012) came from government (38%), pharmaceutical firms (35%), biotechnology firms (12%), medical device firms (6%), and foundations, charities, other private entities (4%). Not all of this medical data is published for all to see and derive benefit. Some of the data is irrelevant, faulty, and biased for profit generation. Even worse is the suppression of healthcare data that shows negative results for a potentially profitable treatment or product (like new drugs) thereby limiting the consumer’s ability to fully perform a benefit/risk analysis.
This situation begs answers to several questions:
- How are health consumers and their healthcare providers in the United States supposed to make sense of good and bad medical data scattered and largely not evaluated for “best” healthcare application?
- Is there an unbiased and independent agency responsible for accumulating, reviewing, and summarizing the medical data (meta-analysis) for patient and healthcare provider use in the United States?
- Should our government use the evidence-based clinical data to develop “best” practice guidelines as the United Kingdom does?
- Is all research funded by private for-profit healthcare businesses tainted by bias and how can we tell when it is?
Healthcare Data 4: Financial Information
Personal “engagement” in healthcare calls consumers to become aware of the prices charged for care, and to actively seek healthcare value. Affordable Health Care and Beyond for ALL Americans will not be achieved if we, the patients, do not play an active role in reducing unnecessary and costly treatments that may not provide much healthcare value. In the United States, we need to be aware of healthcare prices because more and more of the costs of care are being dumped onto us, the consumers of healthcare in the form of High Deductible Health Plans (HDHP), reduced health benefits, and higher out-of-network costs (narrow networks).
Members of HICUP (BB Brigade acronym for those who are engaged in the business of health care in the USA) are not moving to reduce the total prices for healthcare services and products so we must take the ball and act. A very expensive treatment plan that delivers little to no benefit (to the patient) is simply not worth the cost (or risks). Remember that the high cost of health care impacts the economic well-being of every American. Believing that “the insurance company or the government is paying” is using faulty reasoning and invites over-treatment and mistreatment with potential health risks that may not be adequately described in advance.
Unfortunately, the financial information needed to assess the cost of care is treated like closely-guarded, state secrets in the United States. Access to the financial information needed to make a healthcare value assessment is in the hands of our government, individual insurance companies, and healthcare businesses across the country. Recently, partial and largely inexact financial information has been made available to the public (or to select insurance plan members) in less than consumer-friendly venues. Some states are compiling pricing information (like New Hampshire) for their residents, but rely on the very healthcare businesses who don’t want to give up the information. Even published Medicare data is difficult for the average health consumers to use for effective use.
Being able to compare the prices you are being charged with Medicare reimbursement rates for specific medical procedures would give you an idea of how much you are being over-charged. This information is especially important if you do not have health insurance or are forced to seek medical care out-of-network. If your healthcare practitioner choices are limited in your area, then financial data is pretty worthless.
Ideally, the healthcare consumer should be able to go to one independent website, input his/her zip code, and see the Medicare reimbursements paid for given services. Medicare reimbursements are public information and gives consumers a fairly reasonable cost estimate. It would also be helpful to see the prices charged by all local medical providers (doctors and hospitals) along with a benefit/risk analysis for a given procedure or course of treatment. When will this become available?
Because anyone can place information on the Internet, we must to be careful in assessing how “good” or accurate any information we find really is. Information of independent websites needs to be vetted hidden financial agendas and bias. Even accurate information can be packaged in ways that send biased, confusing messages.
Summary: Healthcare Data for Patient Engagement
The evaluation of healthcare data is important for patient engagement and serves as the basis for doctor-patient shared communication. This data includes:
- Individual (Patient) Health Records: Every person should have a complete and easily accessible (electronic) record of his/her health records for coordination of care as the need arises. Information from individual health records could also be used to help other people (e.g., to judge how well a particular treatment worked or didn’t work).
- Educational Information: Gives us a basic understanding of our medical concerns and allows us to communicate with our doctors with greater assurance and knowledge. It is not for self-diagnose but for better “patient engagement”.
- Evidence-Based Clinical (Research) Data: Evidence-based clinical (research) data serves as the foundation for up-to-date healthcare. New medical advances and treatments need to be continuously evaluated against current treatments for the delivery of the greatest healthcare value. (link) Using this data to draft recommended treatment guidelines would help bring “best” outcome medical care to patients across the United States. As this data exists today, only the most medically astute with a lot of time to spare can use it with any degree of application. I would recommend the websites sited above from the United Kingdom for the most consumer-friendly information. This is an area that needs U. S. governmental support and funding.
- Financial Information: The prices charged for healthcare services, testing, and treatments are not available to the healthcare consumer in any form that allows for proper “engagement”. This information is closely guarded by healthcare businesses and insurance companies, and therefore requires government action before the public can make use of it.