Connecting the Dots
With so many different apps storing electronic health information, including a variety of wearables, individuals with an Apple iPhone can use the Health app to link multiple sources and consolidate data into one place for a more comprehensive view. The Health app collects and stores everything from medical history, such as allergies and immunizations, to vitals, like cholesterol and blood pressure. Additionally, the app stores data on sleep schedules and physical activity, to track how you are progressing on meeting your personal wellness goals. Medisafe, Dexcom G6, and Lose it! are a few of the more popular apps that synchronize with the Health app. The app also includes an emergency function that provides first responders a view of your critical medical information and your emergency contact from your phone’s lock screen.
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Most EHRs either have their own app or a patient portal available for you to access your electronic records, but often do not support exchanging data with external apps, especially free ones. Aside from interoperability challenges and security concerns around sharing sensitive medical information, free apps are rarely free. App development and maintenance requires funding, so if the app is free for users to download, the funding is coming from another source, typically through ad sales or selling user data. When using apps, especially those free to download, make sure you do some research before using it to store your medical information.
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You can decide if you want to share information from your EHR with family members so they can stay informed about your medical care. This sharing of medical information can allow others to get updates on your surgery or permit someone else to pick up your prescriptions for you. Watch the video for more information on your rights to share your EHR with others.
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Providers store patient information within an EHR using standard formats to support consistency and interoperability, or electronic data sharing, between other providers to support better care coordination, for billing purposes, and for public health reporting. For the patient summary, the standard EHR format is the HL7 (Health Level Seven International). Within EHRs, there are industry standards to ensure consistency for clinical terminology, diagnoses, procedures, diagnostic tests, medications, and treatments.
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The most common standard codes used by providers in EHRs are:
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Clinical terminology: SNOMED CT (Systematized Nomenclature of Medicine Clinical Terms), maintained by the International Health Terminology Standards Organization (IHTSDO)
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Diagnosis codes: ICD-10 (International Classification of Diseases, 10th edition), developed by the World Health Organization (WHO)
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Outpatient procedures: CPT (Current Procedural Terminology), maintained by American Medical Association (AMA)
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Supplies and procedures not included in CPT: HCPCS (Health Care Common Procedure Coding System), maintained by Centers for Medicare & Medicaid Services (CMS)
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Medications: NDC (National Drug Codes), maintained by the U.S. Food and Drug Administration (FDA)
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Diagnostic tests and results: LOINC (Logical Observation Identifiers Names and Codes), maintained by the Regenstrief Institute
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Centers for Medicare & Medicaid Services. (n.d.). Code Set Overview. Retrieved from https://www.cms.gov/Regulations-and-Guidance/Administrative-Simplification/Code-Sets
HL7 International. (n.d.) About HL7. Retrieved from https://www.hl7.org/
LOINC from Regenstrief. (n.d). About LOINC. Retrieved from https://loinc.org/about/
Future Care Needs
Many older adults want to stay in their own home as they get older, also known as ‘aging in place’, but safety, mobility, and daily activities may be concerns. The National Institute on Aging provides a variety of recommendations for easy home modifications to improve safety and access, such as removing area rugs which can be a tripping hazard, to installing grab bars next to the toilet and shower. This site also provides resources on multiple topics, such as memory problems, depression after the loss of a spouse, incontinence, and driving. In the case of a terminal diagnosis, palliative or hospice care, can be options to make the individual more comfortable as well as provide support for the family. Additionally, these services are often available in a variety of settings, including a nursing home or at home.
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Many people assume a family member will be able to make medical decisions on their behalf if they become incapacitated, but without legal documentation in place, these decisions could be made by someone who does not know your preferences and wishes. Advance directives and end of life planning are not easy conversations to have but are essential to help ensure that wishes are honored and to avoid disagreements between family members around treatment. Once documented, the provider should save a copy in your EHR to ensure medical treatment preferences are available should the situation arise. Unfortunately, because not all EHR systems connect and exchange information currently, it may be necessary to save these documents within multiple record systems, such as with your PCP, Specialist, or Hospital. You should also make sure these documents are available to the individual who is your representative for medical care decisions. Your representative may also be able to access these important documents saved in your EHR if you grant them access to your electronic record. Granting permissions for your representative to access your electronic records is an easy way to leverage EHRs for communicating your medical treatment and preferences.
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The most common documents needed to ensure preferences on medical decisions are:
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Living will: a written document indicating the medical care you would like to receive under specific circumstances
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Health care proxy: a written document that names an individual as your representative for medical care decisions in the event of incapacitation, temporarily or permanently
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Advance directive: a written document that is usually a combination of a living will and health care proxy
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Power of attorney: a written document, usually prepared by a lawyer, which names an individual as your representative for making property, financial, and legal decisions
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POLST (Physician Orders for Life-Sustaining Treatment): a standardized medical form to indicate the types of life-sustaining treatments a patient wants if their condition worsens
The American Bar Association provides resources to help understand more about these legal documents as well as tips on selecting family members to carry out your medical treatment preferences.
Aging in Place (n.d.) Home Modifications Can do Much to Transform People’s Lives. Retrieved from https://aginginplace.com/renovations-as-stimulus-home-modifications-can-do-so-much-more-to-transform-peoples-lives/
American Bar Association. (2020, September 2). Health Care Decision-Making. Retrieved from https://www.americanbar.org/groups/law_aging/resources/health_care_decision_making/
Caring.com (n.d.) A guide to aging in place. Retrieved from https://www.caring.com/caregivers/aging-in-place/#planning-for-success:-10-steps-to-take
Medicare Interactive. (n.d.). Overview of living wills, health care proxies, advance directives, and powers of attorney. Retrieved from https://www.medicareinteractive.org/get-answers/planning-for-medicare-and-securing-quality-care/preparing-for-future-health-care-needs/overview-of-living-wills-health-care-proxies-advance-directives-and-powers-of-attorney
National Institute on Aging. (n.d.). Aging in Place: Growing Older at Home. Retrieved from https://www.nia.nih.gov/health/aging-place-growing-older-home)
Support & Resources
PatientsLikeMe is the world’s largest personalized health network. 750,000+ people living with 2,900 conditions, creating a source of real-world evidence and opportunities for continuous learning. Learn how others manage their symptoms and discover treatments that might work for you. Use smart tracking tools to better understand your health and feel empowered to make informed decisions. Share your health experience to help the next person diagnosed and take part in research that will create a brighter future for all. By connecting with a community, patients can discover new paths forward to improve their health today, and in the future.
The mission of Family Caregiver Alliance (FCA) is to improve the quality of life for family caregivers and the people who receive their care. For over 40 years, FCA has provided services to family caregivers of adults with physical and cognitive impairments, such as Parkinson’s, stroke, Alzheimer’s and other types of dementia. Services include care planning, wellness programs, respite services, and legal/financial consultation vouchers. FCA is a longtime advocate for caregivers in the areas of policy, health and social system development, research, and public awareness, on the state, national and international levels. The services, education programs, and resources from FCA are designed with caregivers’ needs in mind and offer support, tailored information, and tools to manage the complex demands of caregiving. The Family Care Navigator helps family caregivers locate public, nonprofit, and private programs and services nearest their loved one—living at home or in a residential facility. Resources include government health and disability programs, legal resources, disease-specific organizations and more. Links to State-by-State and National resources are also available on this website.
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Care.com, founded in 2006, is a site based on the understanding that quality family care is both a fundamental human need and a key driver of economic growth and empowerment. When children receive quality care in their critical formative years, they are on a path to achievement and success. When seniors receive quality care in their homes, healthcare costs decline with fewer hospital stays. The site offers assorted services to find, manage, and pay for care and provide employment opportunities for caregivers. There are also free resources on topics in the categories of childcare, senior care, pet care, and home care.
Emerging & Future Technologies
New innovations in the healthcare field, ranging from genomics in precision medicine to nanotechnology to organ bioprinting for individuals needing a transplant, have the potential to radically improve the clinical outcomes for patients suffering from life-threatening conditions. These videos explore a variety of future technologies that may soon be common treatments provided to patients.