Patient Power and Andrew’s Blog are among my favorite online resources for information about cancer care. They chronicle so well the world of clinical research, promising treatments and trials, and potential outcomes. It’s great hearing the best of the best in the world of cancer research and treatment explain their work, interpret the findings, and tell us what it all means for cancer patients. Such health information gives cancer patients power to make informed decisions, to plan and live their lives to the fullest.
But patient power is so much more than just information about clinical advances, treatment options, and possible outcomes.1 Patient power includes our rights, capabilities, and responsibilities to access, comprehend, manage, use, and share our own health information: history, conditions, treatments, tests results, reports, and self-monitored health status. Patient power is enhanced by technologies, laws, and practices which enable us to be adequately and effectively informed, engaged, and responsible patients.
So if followers of Patient Power and Andrew’s Blog are to realize the full scope and potential of patient power, they also need to know, understand, embrace, and use the emerging technological and societal developments of health information technology (healthIT), including personal health records (PHR), patient portals, health and fitness apps on mobile phones and tablets, and related, interoperable health monitoring devices.
Bob Dylan strummed, growled, and heralded change of another time: yesterday. Yet that song could very well be an anthem for our time, today, one for the patient power health-IT and PHR will yield.
The changes which will impact healthcare, health-IT, and patient power have been a long time a-comin’.2 They involve the confluence of a number of evolving, emergent technological and societal developments:
First, and primary, is the explosion of information technology3 enabling us to easily access and use information; electronically, often wirelessly, at work, at home, on the go.
Second is our widespread acceptance and ubiquitous use—the assimilation and accommodation–of electronic information technologies. We fit information technologies into our daily lives, and modify our lives to fit them.4
Third is health IT–the hardware, software, databases, infrastructures, standards, and processes–which healthcare providers, insurers, federal entities,5,6,7 non-profits organizations, and for-profit companies have been developing for more than thirty years.
Fourth are the emerging expectations and requirements that patients be better informed about and more engaged in their own healthcare.8
Fifth are the federal laws, policies and rules promoting, incentivizing, and mandating patients’ engagement in their healthcare and meaningful use of their own healthcare information.9
Sixth are other federal laws, policies, and rules which establish standards for health information formats, systems, infrastructure interoperability, and integrity, security, and privacy in health information storage and exchange.10.
Time for action
Q: So what should you, a patient, do?
A: Empower yourself by understanding health-IT and PHR, considering your options, then managing and making meaningful use of your health information.
Q: How do you do that?
A1: Start by visiting PHR4us, a weblog developed to inform and guide beginners to health-IT and, especially, personal health records (PHR). Explore its contents and other resources to which it links.
A1: Create a PHR–one that’s accessible online (e.g., HealthVault or WebMD PHR)–for yourself and for each member of your family. Begin entering and updating your health information.
A1+: If you have a smartphone or table, download, install, and begin using some some of the useful apps (e.g., Focus on Leukemia, Capzule PHR, Cancer.Net Mobile, iTriage).
Q: What else?
A: Learn as much as you can about your health information. E.g.,
Q: Who has it?
Clue: your physicians, clinics, medical centers, laboratories, Medicare, your health insurer.
Q: In what forms can you obtain it?
C: On paper; electronically via the internet or wirelessly, on thumb drives or CDs.
Q: How can you get your health information into your PHR?
C: Enter it manually; transmit it via the internet or wirelessly; use a mobile app to integrate it.
Q: What should you expect from your healthcare providers?
C: Some will be accepting and enthusiastic about health-IT and your PHR. But don’t be surprised if many are not, yet.
Patient power includes patients’ engaged and informed access, use, and sharing of their health and fitness information; healthIT–including mobile apps, patient portals, monitoring devices, and PHR–will substantially empower patients, too.
- This post was drafted earlier this year, following communications with Andrew.
- My first involvement with health-IT was in the mid-80s in the Department of Veterans Affairs when it began developing a computer-based healthcare information system for its medical centers and outpatient clinics. Today, DVA’s VistA program is an exemplary EHR system with the myHealtheVet patient portal empowering its veteran patient population.
- E.g., cable, satellite, and wireless technology and infrastructure; internet technology and content, including, websites, blogs, databases, and business and patient portals; mainframe computers and servers, networking switches and routers; desktop and laptop computers, personal mobile computing and communication devices, i.e., tablets, smartphones
- E.g., see: Patient Apps for Improved Healthcare: From Novelty to Mainstream – Patient Portal Infographic – Modern Healthcare Readers’ Favorite Apps
- E.g., Kaiser Permanente, DVA: MyHealtheVet
- E.g., Electronic Health Records (EHR); Personal Health Record (PHR) platforms (Microsoft’s HealthVault, WebMD PHR), Blue Button, Continuity of Care Document (CCD)
- E.g., medical history, conditions, visitations, treatments, medications, tests, health status, and patient education and counseling.
- See:Engaging Patients in Their Health Care. An informed, engaged ePatient.9,10 will become a principal player on his/her own healthcare team, monitoring, aggregating, and updating personal health information in the PHR from from the stove-piped electronic health records (EHR) and patient portals of multiple healthcare providers and insurers.
- What is Meaningful Use? – ePatient Dave: “Gime me my Damn Data”
- See selected TED Talks on Personal Health IT.