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What are the best datasets for innovators building tools for the US Healthcare system?

The Best Datasets for Innovators; Senior Healthcare.We have used many of these datasets below at HomeHero | Senior Home Care so this list is definitely biased towards datasets and tools for seniors.There are incredible government projects going on now to increase Health Transparency Policies that will reshape the industry. Message me if you are involved or would like to get more involved.Elder care API seniors with local resources such as AAOA, meals, home care, transportationHome health compare offered by local facilities identified by zipcode (home health, PT, speech, social services, aides), quality of patient care and patient survey resultsNursing home compare home characteristics (staffing, deficiencies identified in inspection, quality of care measures, address)Aging Statistics profile of older Americans, including both narrative and statistical charts. Features a profile of elderly populations by state, including a demographic breakdown,and financial profileNational Survey of Area Agencies on Aging Area Agencies on Aging (AAAs) survey was designed to provide basic descriptive information on AAA characteristics, health promotion and disease prevention activity, and management information systems and performance measurement. It is intended to identify areas in which AAAs play a major role in integrating, coordinating, and delivering services to those older persons in most need.State Program Reports State Program Reports are the primary information system for states to report on the Older Americans Act (OAA) program of supportive services, nutrition, caregiver support, and other services they provide. Includes information about OAA participants, what services they receive, and what funding is expended on the program. Serves as a critical data source for measures of the performance of OAA programs.National Ombudsman Reporting System (NORS) annual reports summarize long term care ombudsman efforts on behalf of residents in long term care facilities, including information on cases, complaints, program statistics, and narrative reports. Includes info on bed counts, eldercare facility counts, as well as staff and volunteer countsMedicare Blue Button enrollees can download and use 3 years worth of Medicare claims data showing date and type of services received, address and specialty of providers, medications purchasedMU VDT have the ability to view online, download and transmit their health information within four business days of the information being available to the provider.National Long Term Care SurveyNational Long Term Care Survey (NLTCS) DataThe NLTCS is a nationally-representative sample both of the community and of institutionalized populations and is longitudinal in that sample persons join the survey once they reach 65 years of age and stay in the survey until they either die or are lost to follow-up. Ancillary surveys have been added to measure other characteristics of the 65 and older population, to include a Caregiver Survey to acquire data on informal caregivers themselves (done in 1989, 1999, and 2004).National Health and Aging Trends Study (must register to use data) design and content, the The National Health and Aging Trends Study is intended to foster research that will guide efforts to reduce disability, maximize health and independent functioning, and enhance quality of life at older ages. Only available to academics.OpenFDA is the openFDA API endpoint for adverse drug events. An adverse event is submitted to the FDA to report any undesirable experience associated with the use of a drug, including serious drug side effects, product use errors, product quality problems, and therapeutic failures.Pillbox's API provides access to a search system designed to identify unknown pills. This system makes modifications to queries based on our knowledge of the data to provide results with greater relevancy.Drugs@FDA approved brand and generic prescriptions - includes patient information, labels, approval letters, reviewsNational Survey of Caregivers (Part of NHATS, must register to use data)Sensitive and Restricted Data FilesInterviews were conducted with helpers to NHATS participants who were receiving assistance with self-care, mobility, medical or household activities. The interview included questions on caregiving activities, duration and intensity, support services sought and used, effects on caregiver participation in activities including work, and demographics. Users must register and get approved for access. Only available to academic researchers.Caregiving in the USGeneral CaregivingBroad descriptive statistics that describe the caregiving population, their challenges, and demographic dataAlzheimer CaregiversCondition SpecificDescribes Alzheimers caregivers including care provided and diagnis processVeteran family caregiver resourcesAbout VAList of benefits, services and resources for family caregivers of veteransValuing the Invaluable: 2011 Update - The Growing Contributions and Costs of Family CaregivingValuing the Invaluable: 2011 Update - AARPThis report updates national and individual state estimates of the economic value of family caregiving using the most current available dataRand study of military caregivers the magnitude of military caregiving in the US, the needs and characteristics of caregivers and the gaps in programs, policies and initiativesVA: Shared Decision Making on how to perform care tasks (coordinate care, manage meds, wound care, activities of daily living)ARCH Respite Locactor respite services by state, age of person receivng care, conditions, provider featuresBenefits checkupBenefitsCheckUp.orgSearch tool to identify benefits available (given age/location and other personal characteristics) including food, medications, healthcare, utilitiesYouTube Videos of videos on caregiving , including on VA post-911 caregivingEveryday tips and checklists for caregivers set of checklists and tips for caregivers of veterans addressing managing patient files and medical records, managing medications, accessing resources, what to do when the person you care for is hospitalized, etcDiagnosis care sheetsDiagnosis Care SheetsPlain language resources describing various conditions including alxheimers, PTSD, TBI, ALS, ParkinsonsNational Survey of Older Americans Act (OAA) Participants National Survey of OAA Programs is a collection of annual national surveys of recipients of select Title III services. Their purpose is to obtain performance outcome measurement information, which is then used in AoA’s GPRA plan and PART assessment. The survey instruments focus on consumer assessment of service quality and consumer-reported outcomes. The instruments also measure special needs characteristics such as physical and social functioning of the people who receive services.AgingStats.gov report provides the latest data on aspects of the lives of older Americans and their families. It is divided into five subject areas: population, economics, health status, health risks and behaviors, and health care.NY State - Sustaining Informal Caregiver York State Caregiver Support Programs: Report FindingsBrookdale Foundationwww.brookdalefoundation.orgPublishes resources to support caregivers, such as "GrandFacts: Data, Interpretation, and Implications For Caregivers"Veterans Benefit Factsheets sheets detailing benefits and services available to veterans.LeadingAge: CAST Technology Toolkits and state level reports, roadmaps and whitepapers produced by CAST.Family Caregivers Providing Complex Chronic Care to Their Spouses caregivers are particularly vulnerable because they are older, have lower educational levels and less income, and are less likely to be employed than nonspousal caregivers. This is the second of three reports that look into the different roles a family caregiver is in while performing complex medical/nursing tasks.Home Alone: Family Caregivers Providing Complex Chronic Care study challenges the common perception of family caregiving as a set of personal care and household chores that most adults already do or can easily master. This report documents the rapidly expanding role of family caregivers, which has growm to include performing medical/nursing tasks of the kind and complexity once only provided in hospitals.Caregiving in the U.S. - NAC and AARP report emphasizes the use of the Internet for information, what public policies would support caregivers, and the use of technology in caregiving. Areas examined in the study include the prevalence of caregivers in the U.S., demographic characteristics of caregivers and care recipients, and how caregivers are affected by their role at work, at home, and in their health situation.NYC Department of the Aging - ServicesDFTA Senior Services Search PageFind caregiving services in the NYC area by zipcodeNational Center on Caregiving care navigator, training, research & publicationsCaregiver Action Network and tools for caregiversNational Alliance for Caregiving Steps for Caregivers, and other informational resourcesNational Resource Directory veterans can find resources and information on benefits, education, employment, caregiving, and more.VA Caregiver Support can find support in their local area by entering their zip code. Also a support line for vets to call.Caregiver Toolbox for caregivers ranging from diagnostic info to everyday tips and checklists.Caregiving Resource CenterSenior Care Resources, Assisted Living Information, and Caregiving Help and Advice - AARPInformation, tips, and tools for caregiversAARP Benefits QuicklinkNCOA's Online Screening ServiceTool that helps seniors find programs that help save money on health care, medication, food, utilities, children’s health costs and more.WISER: Women's Institute for a Secure RetirementWISER Women - CaregivingThe overwhelming majority of caregivers are females providing unpaid care for loved ones. It is especially important for these women, who often take time out of the workforces, to plan for retirement and manage finances. Use these resources to learn about caregiving and saving options for caregivers.Veterans Health LibraryMy HealtheVet Veterans Health LibrarySource for veterans health info.VA: Building Better Caregivers six-week online workshop for family caregivers of Veterans.If you are taking care of a Veteran, this workshop will help you learn a variety of skills like time and stress management, healthy eating, exercise and dealing with difficult emotions.National Caregiver Training Program 45 - 46) Legal and important documents checklist for caregiversTips for lifelong caregiving Officers Association has created a web-based resource for legal issues. Helpful info on creating a budget, power of attorney, etcGuide to Longterm Care Guide provides information about long term care options – home and community based, and in residential settings. It also provides a "Shared Decision Making" approach to long term care decisions.Caregiver / Family Member Services and services available for veteran caregivers.Longterm Scorecard State Long-Term Services and Supports (LTSS) Scorecard is a multidimensional approach to measure state-level performance of LTSS systems that assist older people, adults with disabilities, and their family caregivers.Family care navigatorFamily Care NavigatorLocates government, legal and disease specific resources by stateCaregiver assessment toolsZarit Burden InterviewDescriptions and links to multiple assessment tools for caregiver burden, social support and self-efficacySo Far Away: Twenty Questions for Long-Distance Caregivers and answers for many issues that come up in long distance caregivingCaregivers of Veterans the roles and needs of caregivers caring for veteranseConnected caregiversNational Alliance for CaregivingDescribes how family caregivers use technology to support caregiving

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