Resources
Empowering Patients | Hospitals | Doctors | Infections | Medicare and Social Security | Senior Issues and Home Health Care | Pharmaceuticals & Medical Devices | For Additional Information (Links) | Specialty Organizations | State & Federal Representatives | Reading List | Health Care Apps
Empowering Patients
Disability Rights Connecticutis a statewide non-profit organization with a mission to advocate for the human, civil, and legal rights of people with disabilities in Connecticut. Since 2017 Disability Rights Connecticut has been an independent, statewide, non-profit that protects and advances the legal rights of people with disabilities. Disability Rights Connecticut; 846 Wethersfield Ave.; Hartford, CT 06114; (800) 842-7303 (toll-free in CT); (860) 297-4300 (voice); (860) 509-4992 (videophone); (860) 296-0055 (fax); info@disrightsct.org; www.disrightsct.org .
Kepro is for patients on Medicare, and is your Beneficiary and Family Centered Care Quality Improvement Organization (BFCC-QIO). They are available to help you if you feel that you are not ready for discharge from a hospital or if your skilled services are ending too soon at a rehabilitation facility, home health agency, or hospice. You can also contact Kepro if you have a quality of care concern about the care that you received from your hospital, doctor, or others. They will have your situation reviewed by a physician. Additionally, If you are on Medicare, you can call Kepro at their CT phone #: 888-319-8452 or 216-447-9604 and ask about Immediate Advocacy which is used to help people quickly resolve a problem about medical care or services. It often involves Kepro calling a healthcare provider on your behalf toresolve a problem.
Decisional Framework for Advance Care Planning: The journey of advance care planning can be long and often complex. From making decisions while healthy to ensuring wishes are met at the end of life, each step has different considerations and conversations. This decisional framework for advance care planning, co-developed by Planetree International and the Connecticut Center for Patient Safety, supports individuals in navigating the course of advance care planning. In addiiton to the framework tool, there is an on-demand "Bite-size" webinar to provide a brief overview of the tool and a guide on how it is designed to be used.
A new tool, the Decisional Framework for Advance Care Planning has been developed as a collaborative project of the Connecticut Center for Patient Safety and Planetree to support and assist people in exploring and communicating their personal wishes for how they wish to live and what their priorities are at the end of their lives.
FAIR Health Consumer Cost Lookup is a site that provides a user friendly guide to health insurance. It is available on your computer and there is a free Google app and an iPhone app. FH Health Insurance 101 is a series of guides and videos that use “plain speak” to explain health insurance. Additionally, you can estimate your dental and medical costs based on the zip code where you will receive services.
www.doctella.com If you are having surgery or a medical procedure and looking for questions to ask your doctor and things to consider, this app may be helpful. Doctella helps you be a partner in your care by providing tools to: Help you ask your doctor important questions, Get organized before your procedure and to Potentially Reduce errors in your care. It is free and available on the web and as an Apple and Android App.
At the Medicare.gov website you will find a set of tools to help you compare different treatment facilities that you may need to use. The Medicare website offers comparisons and other information on dialysis facilities, nursing homes, hospitals and home health agencies. By just entering a location or the name of a facility it offers the ability to look at several locations at one time in order to compare them to each other.
The Center for Medicare and Medicaid Services (CMS) has published an excellent guide to support consumers on their journey from coverage to care. The brochure can be found and downloaded here: A Roadmap to Better Care and a Healthier You (English) (Español). For downloads by chapter click here.
Hospital, nursing home or physician or physician’s office Tip Sheets. Created by the Informed Patient Institute, tip sheets are now available for residents of Connecticut to inform them on how to handle concerns about quality and treatment in a hospital, nursing home or physician or physician’s office.
A simple guide for "Finding reliable health information on the web" put out by APIC can be found by clicking here.
FAIR Health offers a dynamic suite of tools and resources that you can use to give yourself access to guidance, information and cost lookup tools that will equip and empower you to take charge of your health coverage and your health with an understanding of the cost implications of your choices. Using the FairHealth Healthcare Cost Estimator ℠ mobile app or the website, you can estimate costs for specific services and related procedures, estimate charges, reimbursement and out-of-pocket costs for medical and dental procedures, and tailor a search based on different plan reimbursement provisions.
The iTriage® website offers solutions for healthcare consumers. iTriage, LLC a subsidiary of Aetna, has developed iTriage® which is a free mobile app and website that helps answer the two most common medical questions: "What could be wrong?" and "Where can I go?" by offering decision support tools to research problems, take action, and improve care. You will find a symptom checker, medication information, follow-up care suggestions, and storage and retrieval for personal health information.
The Care Transitions Program webpage has many useful tools and links for patients and their caregivers for use during transitions as well as every day. By knowing what to expect, you may be able to avoid health care complications and even re-hospitalization. Their site includes a discharge checklist, instructions on how to refill a weekly pill box, useful tips for managing medication and other tools and links to other heplful sites
HowsYourHealth.org is a Family of Web-sites designed to improve health and health care. This website helps build or strengthen the partnership between patients and providers by offering the patient a patient assessment tool and patient resources. After a brief survey, you are provided with a report summarizing important issues and referring you to additional information, an action form that can facilitate communication with your doctor and other tools as well . For a free download of their companion book, How's Your Health, click here.
The new Kaiser Family Foundation website provides a streamlined experience centered around 10 major health policy topics. With content continually updated on the home page and topic pages, the site reflects both current health policy issues and the Foundation's latest resources. All content on a topic - whether a fact sheet, poll, slide, data table, video or infographic - is integrated for one-stop searching and viewing.
The Never Events Collaborative. The term "Never Events" was introduced in 2001 at the National Quality Forum by Dr. Ken Kizer, in response to severe, largely preventable, hospital acquired conditions. The NQF initially defined 27 conditions which were revised and expanded to 28 in 2006. The term "Never Events" was also redefined as "Serious Reportable Events". This website provides a wealth of information on medical error for the healthcare consumer.
Aging with Dignity is a national non-profit organization with a mission to affirm and safeguard the human dignity of individuals as they age and to promote better care for those near the end of life. Aging with Dignity introduced their living will, Five Wishes, in Florida in 1997, and a year later, to the nation. Dubbed "the living will with a heart and soul," Five Wishes today meets the legal requirements in 42 states and has helped literally millions of people plan for and receive the kind of care they want. Five Wishes is unique among all other advance directives and living wills because it is user-friendly and easy to complete. Five Wishes Online was introduced in 2011, allowing people to complete Five Wishes on screen and print out a personalized document immediately. The document is available in 26 languages and in Braille.
Campaign Zero's website offers a number of patient safety checklists for free as well as additional information and other tools to support patient safety. Their focus is on preventing the preventable by highlighting NEVER EVENTS, a list of preventable hospital hazards which often result in harm to patients — or death; events that Medicare identified as such because they should never happen to you or someone you love in the hospital.
20 Tips to Help Prevent Medical Errors - Patient Fact Sheet This is a one page guide of 20 easy to follow tips of What You Can Do to help to prevent medical errors and Stay Safe.
ConsumerHealthChoices.org brings together reports from Consumer Reports magazine, Choosing Wisely brochures, their video portfolio and other resources at this free site. Each of the in-depth topical collections on this site is focused on an issue of particular importance to healthcare consumers. As with other items offered on this site, these materials are free for consumers and their families to read, print and share.
Choosing Wisely®. Choosing Wisely® aims to promote conversations between physicians and patients by helping patients choose care that is: Supported by evidence, Not duplicative of other tests or procedures already received, Free from harm, and Truly necessary. In response to this challenge, national organizations representing medical specialists have been asked to "choose wisely" by identifying five tests or procedures commonly used in their field, whose necessity should be questioned and discussed. The resulting lists of "Five Things Physicians and Patients Should Question" will spark discussion about the need—or lack thereof—for many frequently ordered tests or treatments.
The Empowered Patient Coalition and Engaged Patients. The Empowered Patient Coalition has has developed The Empowered Patient Guide to Hospital Care for Patients and Families, a detailed and comprehensive patient guide to hospital care which will give consumers a blue print for interacting with the health care system in ways that are safe, successful and empowering. The coalition has also developed a The Free Fact Sheets which is a detailed and comprehensive set of "Fact Sheets" which will empower consumers of healthcare. The Empowered Patient Coalition has also launched a Patient Decision Support Web App. It is a tool to help people make health and medical treatment decisions by examining their personal needs and preferences the health decision they are facing. Their patient engagement project including their free resources can be found at www.EngagedPatients.org
The Informed Patient Institute. The Informed Patient Institute (IPI) is an independent nonprofit organization that provides credible online information about health care quality and patient safety for consumers. IPI rates websites that provide performance information about health care providers and professionals as well as the usefulness of online doctor, hospital, and nursing home report cards. They don't rate individual health facilities or practitioners — but will tell you who does.
The FDA Patient Network web site is an interactive tool for educating patients, patient advocates, and consumers. It brings together, in one place, information that is important to patients, making it easier for them to find what they are looking for and to understand the significance of their findings. According to the website, The Patient Network Brings the Consumer Voice to Drug and Device Approval and Safety.
Questions Are The Answer Get more involved in your health care at:
http://www.ahrq.gov/questionsaretheanswer/
Consumers United for Evidence-based Healthcare (CUE) is a national coalition of health and consumer advocacy organizations committed to empowering consumers to make the best use of evidence-based healthcare (EBHC).
CAPS Consumers Advancing Patient Safety (CAPS) is introducing a new online forum at www.patientsafety.org where consumers and healthcare providers can share information to improve healthcare safety.
Office of the Healthcare Advocate If you need healthcare or healthcare coverage or have problems with your coverage and don't know where to turn, please call us. The Office of the Healthcare Advocate is here to help you understand what options you have, how to get and fight for your healthcare coverage, and to make sure you get covered for your medical needs. View
Health News Review Objective ratings of health and medical journalism. View
Foundation for Informed Decision Making to ensure that patients understand their choices and have the information and support they need to make sound medical decisions. View
Agency for Health Care Policy and Research Empowering patients through knowledge about a variety of relevant issues View
National Committee for Quality Assurance (NCQA) – Improving Healthcare. Offers Health Insurance Ratings where you can look up your plan and see how it rates. View
National Institute of Health, Drug Watch Keeping an eye on pharmaceuticals View
The Safe Patient Resource Center Learn how to be a SAFE PATIENT and experience your best expected outcome by reducing the risk of potential medical errors. View
Cochrane Consumer Network (CCNet) The Cochrane Consumer Network consists of people committed to the importance of consumer participation in informed healthcare decision-making processes. If you can go online, you can find summaries of the best evidence on health care at: http://summaries.cochrane.org. The Cochrane Consumer Network exists to support health care users, their parents and carers learn about evidence-based healthcare. It encourages consumers throughout the world to give their perspectives and help set priorities for health care.
Hospitals
ProPublica's: A Patient's Guide: How To Stay Safe In a Hospital provides many simple to follow basic care practices to lead to a safer hospital experience.
The HospitalInspections.org website run by the Association of Health Care Journalists (AHCJ) aims to make federal hospital inspection reports easier to access, search and analyze. This site includes details about deficiencies cited during complaint inspections at acute-care, critical access and psychiatric hospitals throughout the United States since Jan. 1, 2011. The Connecticut hospitals can be found here in addition to those across the United States.
The Commonwealth Fund has developed a website that takes data from a variety of sources and allows consumers to compare hospitals on a number of variables. The consumer is able to customize their reports, save them, and learn about various aspects of healthcare. New and updated performance data comparing health care quality and safety, timely access to care, and patient experiences in hospitals and regions are now available on WhyNotTheBest.org.
Healthgrades: To help consumers understand, compare and evaluate hospital performance, Healthgrades provides objective, comprehensive information about hospital quality in America's hospitals. Healthgrades evaluates hospitals solely on clinical outcomes—risk-adjusted mortality and in-hospital complications. Their analysis is based on approximately 40 million Medicare discharges for the most recent three-year time period available. The data measures 31 common procedures and conditions and adjusts for each patient's age, gender, and medical condition.
Beginning in 2012, Consumer reports has rated hospitals for safety, using the most current data available to us at the time of our analysis. It includes information from government and independent sources on 1,159 hospitals in 44 states. They focused on six categories in their safety ratings: infections, readmissions, communication, CT scanning, complications, and mortality.
Joint Commission Find a health care organization that meets The Joint Commission's patient safety and quality standards ... View
Hospital Compare This tool provides you with information on how well the hospitals in your area care for all their adult patients with certain medical conditions. This information will help you compare the quality of care hospitals provide. Hospital Compare was created through the efforts of the Centers for Medicare and Medicaid Services (CMS) and organizations that represent hospitals, doctors, employers, accrediting organizations, other Federal agencies and the public. View
The Leapfrog Group Hospital quality ratings can be viewed here. For additional information to help you decide "What Hospitals Should I Use? Which Should I Avoid?" click here
Compare Hospitals 2011 National Healthcare Quality & Disparities Reports - View
National Committee for Quality Assurance (NCQA) – Improving Healthcare. Offers Health Insurance Ratings where you can look up your plan and see how it rates. View
The Informed Patient Institute. The Informed Patient Institute (IPI) is an independent nonprofit organization that provides credible online information about health care quality and patient safety for consumers. IPI rates websites that provide performance information about health care providers and professionals as well as the usefulness of online doctor, hospital, and nursing home report cards. They don't rate individual health facilities or practitioners — but will tell you who does.
Doctors
ProPublica's Surgeon Scorecard allows you to look up a surgeon by name, hospital affiliation or location. Guided by experts, ProPublica calculated death and complication rates for surgeons performing one of eight elective procedures in Medicare, carefully adjusting for differences in patient health, age and hospital quality. Use this database to know more about a surgeon before your operation.To learn more about this tool, view an NBC News Video here.
Physician Compare is a Centers for Medicare and Medicaid Services (CMS) website that helps you find and choose physicians and other healthcare professionals enrolled in Medicare so that you can make informed choices about the healthcare you get, as required by the Affordable Care Act (ACA) of 2010.
ProPublica's Prescriber Check-up site allows you to look up your doctor, nurse practitioner, physician assistant and other licensed provider to find out more about their prescribing habits and patterns and experience with the prescribed medications. There is also a link to see if s/he has a financial relationship with any Pharamceutical companies.
Citizens For Responsible Care and Research (CIRCARE) provides links to find information about physician licensure, training, and disciplinary history as well as a wealth of other information related to medical research and treatment.
CT Physician profiles verify licenses and certifications for most licensed healthcare and environmental health practitioners, certified nurse aides in the Connecticut State Registry and verify licenses for various healthcare facilities including hospitals, nursing homes, assisted living facilities and clinics.
Federation of State Medical Boards Search each state's disciplinary database and Physician profiles and disciplinary histories. There is a nominal charge for this report generated by the Federation of state medical boards.
Rate and Review Physicians On RateMDs.com users are asked to consider a doctor's knowledge, helpfulness and punctuality when providing a rating.
The Informed Patient Institute. The Informed Patient Institute (IPI) is an independent nonprofit organization that provides credible online information about health care quality and patient safety for consumers. IPI rates websites that provide performance information about health care providers and professionals as well as the usefulness of online doctor, hospital, and nursing home report cards. They don't rate individual health facilities or practitioners — but will tell you who does.
Infections
Sepsis Alliance is the largest sepsis advocacy organization in the U.S. working in all 50 states to save lives and reduce suffering from sepsis. Sepsis Alliance is a charitable organization run by a dedicated team who share a strong commitment to battling sepsis. This website has patient and family resources including: support for those Diagnosed With Sepsis, Life After Sepsis, Sepsis and Mental Health, Sepsis Information Guides and more.
The Committee to Reduce Infection Deaths (www. hospitalinfection.org) has excellent resources related to infection control in healthcare, rehab, and long term care facilities.
Infection Prevention Toolkit Approximately 2 million health-care-associated infections occur in hospitals in the United States each year. A free copy of this year's International Infection Prevention Week tool kit for patients and families and one for professionals is available from the Association for Professionals in Infection Control and Epidemiology, Inc. (APIC).
Consumers Union Safe Patient Project (CU) is an expert, independent, nonprofit organization whose mission is to work for a fair, just, and safe marketplace for all consumers and to empower consumers to protect themselves. CU features information, links and resources on their Hospital Acquired Infections page. HAIs are a leading cause of death in the U.S. and Consumers Union supports public disclosure of infection rates so that you can choose the safest hospital and hospitals will have an incentive to improve. In 2008, CU also launched several other initiatives, including ConsumerReportsHealth.org and the Consumer Reports Health Ratings Center, which serve to educate and empower consumers to make more informed health-care decisions and to help change the market.
Centers for Disease Control and Prevention CDC invests its annual budget in projects that positively impact the health of people everywhere. See their page on Healthcare-associated infections View
CT DPH - Healthcare Associated Infections Program Web Page In 2006, the Connecticut legislature established the Committee on Healthcare Associated Infections (HAIs) and charged it with advising the Connecticut Department of Health (DPH) with respect to the development, implementation, operation, and monitoring of a mandatory reporting system for HAIs in Connecticut. Site includes current public reporting, naming hospitals, on central line infections rates. View
Medicare and Social Security
Kepro is for patients on Medicare, and is your Beneficiary and Family Centered Care Quality Improvement Organization (BFCC-QIO). They are available to help you if you feel that you are not ready for discharge from a hospital or if your skilled services are ending too soon at a rehabilitation facility, home health agency, or hospice. You can also contact Kepro if you have a quality of care concern about the care that you received from your hospital, doctor, or others. They will have your situation reviewed by a physician. Additionally, If you are on Medicare, you can call Kepro at their CT phone #: 888-319-8452 or 216-447-9604 and ask about Immediate Advocacy which is used to help people quickly resolve a problem about medical care or services. It often involves Kepro calling a healthcare provider on your behalf toresolve a problem.
At the Medicare.gov website you will find a set of tools to help you compare different treatment facilities that you may need to use. The Medicare website offers comparisons and other information on dialysis facilities, nursing homes, hospitals and home health agencies. By just entering a location or the name of a facility it offers the ability to look at several locations at one time in order to compare them to each other.
There are two organizations that are experts in Medicare: the Medicare Rights Center and the Center for Medicare Advocacy.
Medicare the Centers for Medicare and Medicaid Services CMS
Senior Issues and Home Health Care
Kepro is for patients on Medicare, and is your Beneficiary and Family Centered Care Quality Improvement Organization (BFCC-QIO). They are available to help you if you feel that you are not ready for discharge from a hospital or if your skilled services are ending too soon at a rehabilitation facility, home health agency, or hospice. You can also contact Kepro if you have a quality of care concern about the care that you received from your hospital, doctor, or others. They will have your situation reviewed by a physician. Additionally, If you are on Medicare, you can call Kepro at their CT phone #: 888-319-8452 or 216-447-9604 and ask about Immediate Advocacy which is used to help people quickly resolve a problem about medical care or services. It often involves Kepro calling a healthcare provider on your behalf toresolve a problem.
Decisional Framework for Advance Care Planning: The journey of advance care planning can be long and often complex. From making decisions while healthy to ensuring wishes are met at the end of life, each step has different considerations and conversations. This decisional framework for advance care planning, co-developed by Planetree International and the Connecticut Center for Patient Safety, supports individuals in navigating the course of advance care planning. In addiiton to the framework tool, there is an on-demand "Bite-size" webinar to provide a brief overview of the tool and a guide on how it is designed to be used.
A new tool, the Decisional Framework for Advance Care Planning has been developed as a collaborative project of the Connecticut Center for Patient Safety and Planetree to support and assist people in exploring and communicating their personal wishes for how they wish to live and what their priorities are at the end of their lives.
Founded in 1978 and headquartered in New York City, SAGE (Services & Advocacy for GLBT Elders) is a national organization that offers supportive services and consumer resources to LGBT older people and their caregivers; advocates for public policy changes that address the needs of LGBT elders; and provides education and technical assistance for aging providers and LGBT community organizations through its National Resource Center on LGBT Aging. Through their work, SAGE builds welcoming communities and keeps important and relevant issues in the national conversation to ensure a fulfilling future for all LGBT people. SAGE is the country’s largest and oldest organization dedicated to improving the lives of lesbian, gay, bisexual, and transgender (LGBT) older adults.
The Committee to Reduce Infection Deaths (www.hospitalinfection.org) has excellent resources related to infection control in healthcare, rehab, and long term care facilities. Click here to view their brochure "10 Steps You Can Take to Reduce the Risk of Infection in a Nursing Home.
Senior Care Helper is a website that offers resource for Senior Living and Elder Care including such topics as senior care, health topics for seniors and a guide to senior discounts.
Senior Resources Agency on Aging is a strong voice for the region's elderly citizens. They work to enhance the quality of life for older persons. In addition to advocating legislatively, they work to increase public awareness of senior issues. Their mission is to provide information and services to the aging population, individuals with disabilities, their families and care providers to maintain or improve their independence and quality of life. Their website is a arich resource.
At the Medicare.gov website you will find a set of tools to help you compare different treatment facilities that you may need to use. The Medicare website offers comparisons and other information on dialysis facilities, nursing homes, hospitals and home health agencies. By just entering a location or the name of a facility it offers the ability to look at several locations at one time in order to compare them to each other.
Aging with Dignity is a national non-profit organization with a mission to affirm and safeguard the human dignity of individuals as they age and to promote better care for those near the end of life. Aging with Dignity introduced their living will, Five Wishes, in Florida in 1997, and a year later, to the nation. Dubbed "the living will with a heart and soul," Five Wishes today meets the legal requirements in 42 states and has helped literally millions of people plan for and receive the kind of care they want. Five Wishes is unique among all other advance directives and living wills because it is user-friendly and easy to complete. Five Wishes Online was introduced in 2011, allowing people to complete Five Wishes on screen and print out a personalized document immediately. The document is available in 26 languages and in Braille.
The Washington Post's new Hospice Consumer Guideshows whether the hospice has provided more intense levels of care for patients suffering a crisis; how much it spends on nursing visits per patient; and whether it has won approval from one of three outside accrediting agencies, the Joint Commission, the Accreditation Commission for Health Care and Community Health Accreditation Program, or CHAP.
New York StateWide Senior Action Council (http://www.nysenior.org/) is a grassroots membership organization made up of individual senior citizens and senior citizen clubs from all parts of New York State. The site is filled with valuable information on many senior issues and although it is a NYS based organization, much of the information and resources are universal.
HealthinAging.org, created by the American Geriatrics Society Foundation for Health in Aging (FHA), to provide consumers and caregivers with up-to-date information on health and aging. Overseen by a team of experts on caring for older adults, HealthinAging.org content is based on resources that the American Geriatrics Society has developed for its professional members.
The AGS Foundation for Health in Aging (FHA) is a national non-profit organization established in 1999 by The American Geriatrics Society. Their mission is to improve the health of older adults by providing health information to older adults and those who care for them; advocating on behalf of programs and policies that help older adults to lead healthy, active lives; and supporting research on the diseases and disorders of older adults.
Nursing Home Inspect: ProPublica has unveiled a new tool called Nursing Home Inspect which allows the user to search through thousands of recent government inspection reports. This application allows you to search based on different variables across all of the reports simultaneously. A related article, "What We Found Using Nursing Home Inspect" gives insight on how to effectively access information using the Nursing Home Inspect tool.
Connecticut Long Term Care Ombudsman. Mandated by the Federal Older American's Act and Connecticut General Statute 17b-400, the Connecticut Long Term Care Ombudsman Program protects and promotes the rights and quality of life for residents of skilled nursing facilities, residential care homes and managed residential care communities (also known as assisted living facilities). Click here to locate contact information.
TITLE 42, Chapter IV-f): On behalf of residents of long term care facilities, if needed, a grievance can be registered with the facility without discrimination or reprisal by filling out a grievance form. Click here to view further information and the appropriate form.
Consumers and their families may file complaints about health care providers or facilities including hospitals, nursing homes, home health care, laboratories with the Connecticut Department of Public Health.
The Connecticut Department of Public Health publishes a report titled: "Chronic and Convalescent Nursing Homes; Rest Home with Nursing Supervision; Residential Care Homes. This publication contains a listing of all nursing home facilitieslicensed by the state of Connecticut and general information pertaining to each one. The last eight pages contain the CT DPH Report 2011-12 Nursing Home Fines.
The National Consumer Voice for Quality Long-Term Care was formed as NCCNHR (National Citizens' Coalition for Nursing Home Reform) in 1975 because of public concern about substandard care in nursing homes. The Consumer Voice is the outgrowth of work first achieved by advocates working for Ralph Nader and later for the National Gray Panthers.
The Connecticut Network for Legal Aid offers free legal help for people with very low incomes. However, regardless of income level, they offer self help guides online in areas of CT Elder Law legal rights information including the rights and statutes pertaining to nursing home residents.
The Center for Medicare Advocacy, Inc. provides information as it relates to Medicare and Nursing Home / Skilled Nursing Facility Services.
The Pioneer Network - Culture Change for Nursing Homes. Pioneer Network was formed in 1997 by a small group of prominent professionals in long-term care to advocate for person-directed care. This group called for a radical change in the culture of aging so that when our grandparents, parents — and ultimately ourselves — go to a nursing home or other community-based setting it is to thrive, not to decline.
The National Long-Term Care Ombudsman Resource Center provides support, technical assistance and training to the 53 State Long-Term Care Ombudsman Programs and their statewide networks of almost 600 regional (local) programs. The Center's objectives are to enhance the skills, knowledge, and management capacity of the State programs to enable them to handle residents' complaints and represent resident interests (individual and systemic advocacy).
Nursing Home Compare - CMS Adds Searchable Database of Lowest-Quality Nursing Homes Nationwide to Web Site. Nursing Home Compare is a searchable database with the names of the nursing homes that rank the lowest 5% to 10% in quality based on State inspection results.
Pharmaceuticals & Medical Devices
Pharmalot covers news, issues and trends concerning the pharmaceutical industry. It is a place to go for information. The blog is also a community, where people who work in and with the industry - or follow it for any number of reasons - stop by to exchange ideas and opinions about the latest developments. Pharmalot is now produced by Stat, a national publication from Boston Globe Media Partners with coverage of health, medicine and life sciences.
RxISK is a free, independent drug safety website to help you weigh the benefits of any medication against its potential dangers. All drugs have side effects, but people often don’t link the effect they are experiencing to starting, stopping, or changing the dose of a drug. RxISK provides free access to information and tools to help you assess the connection between a drug and a side effect.
PharmedOut is a Georgetown University Medical Center project that advances evidence-based prescribing and educates healthcare professionals about pharmaceutical marketing practices. PharmedOut was founded with funds from the settlement of allegations that Warner-Lambert conducted an unlawful marketing campaign for the drug Neurontin that violated state consumer protection laws.
Consumers Union's Safe Patient Project Initiative supports a strong FDA oversight system that ensures that medical devices are safe and effective before they are sold and monitors devices to make sure they are not harming patients. They offer a wealth of information, links and resources on their Medical Device Safety page.
Consumer Union Best Buy Drugs Best Buy Drugs is a public education project. It will help you talk to your doctor about prescription drugs, and find the most effective and safe drugs that also give you the best value for your health care dollar.... more
The Independent Drug Information Service (IDIS) is an innovative program designed to provide health professionals and patients with an evidence-based, non-commercial source of the latest findings about the drugs that are prescribed. The program is provided by the Alosa Foundation, a nonprofit organization that is not affiliated in any way with any pharmaceutical company.
Adverse Events, Inc. (AEI) is a provider of up-to-the-minute, critical, potentially life-saving information regarding side effects associated with FDA-approved prescription medications. AEI has created a unique set of online tools that are optimized to provide un-paralleled access to adverse event information on over 4,000 drugs, in an easy to understand and navigate format. Click here to see the top 10 Drugs with the Highest Number of Adverse Events Reported. AEI's tools give control over treatment plans back to patients and their doctors, while providing an immediate view of potential trends and problems in the drug industry to pharmaceutical, healthcare, insurers, financial institutions and media.
ProPublica ProPublica is an independent, non-profit newsroom that produces investigative journalism in the public interest.
Community Catalyst Community Catalyst, a national advocacy organization, has been giving consumers a voice in health care reform for more than a decade. They provide leadership and support to state and local consumer organizations, policymakers and foundations that are working to guarantee access to high-quality, affordable health care for everyone.
DrugWatch Keeping an eye on pharmaceuticals. Read more here.
WorstPills.org WorstPills.org is a project of Public Citizen, a non-profit group that advocates for health, safety and democracy. WorstPills.org's own doctors and pharmacists "review the leading medical literature to write our drug profiles and we update your drug's information every six months. Our goal is to provide you with accurate, unbiased information - which is why we don't take any money from the government or corporations, including drug companies."
ClinicalTrials.gov ClinicalTrials.gov is a service of the U.S. National Institutes of Health. The data on ClinicalTrials.gov changes nightly. New studies are published to the Web site and existing studies are updated every day.
FiDA - FAILED Implant Device Alliance states on their website that joint replacements are the #1 expenditure of Medicare. The process of approving these medical devices is flawed according to the Institute of Medicine. It is time for patients' voices to be heard as stakeholders and for public support for increased medical device industry accountability and heightened protections for patients.
For Additional Information (Links)
Connecticut Health Investigative Team [C-HIT] is a non-profit dedicated to producing original, responsible, in-depth journalism on issues of health and safety, in Connecticut and the surrounding region. C-HIT is a web-based news service that is comprised of a team of award-winning journalists, based in Connecticut, who have come together to provide the public with informative stories about health, safety and medical issues.
Commonwealth Fund supports independent research on health care issues and makes grants to improve health care practice and policy. The U.S. health care system is the most expensive in the world, and it yields worse results than the systems in Britain, Canada, Germany, Australia and New Zealand, according to a report issued by the Commonwealth Fund. The report found that the U.S. differs from better-performing nations by not having universal health insurance.
ProPublica ProPublica is an independent, non-profit newsroom that produces investigative journalism in the public interest.
Community Catalyst Community Catalyst, a national advocacy organization, has been giving consumers a voice in health care reform for more than a decade. We provide leadership and support to state and local consumer organizations, policymakers and foundations that are working to guarantee access to high-quality, affordable health care for everyone.
Consumers Union Consumers Union (CU) is an expert, independent, nonprofit organization whose mission is to work for a fair, just, and safe marketplace for all consumers and to empower consumers to protect themselves. In 2008, CU also launched several initiatives, including ConsumerReportsHealth.org and the Consumer Reports Health Ratings Center, which serve to educate and empower consumers to make more informed health-care decisions and to help change the market.
Mayo Clinic A wealth of information. Read more
Specialty Organizations
Disability Rights Connecticutis a statewide non-profit organization with a mission to advocate for the human, civil, and legal rights of people with disabilities in Connecticut. Since 2017 Disability Rights Connecticut has been an independent, statewide, non-profit that protects and advances the legal rights of people with disabilities. Disability Rights Connecticut; 846 Wethersfield Ave.; Hartford, CT 06114; (800) 842-7303 (toll-free in CT); (860) 297-4300 (voice); (860) 509-4992 (videophone); (860) 296-0055 (fax); info@disrightsct.org; www.disrightsct.org .
The Dupuytren Foundation is an independent 501(c)(3) public charity established in 2008. Their mission is to find a cure for Dupuytren Disease as rapidly and efficiently as possible. Dupuytren disease is the most common crippling hand condition that people have never heard of. It affects at least ten million Americans, making their fingers permanently bent, sometimes severely. See our article on Dupuytren Disease at: http://conta.cc/2vPq4CK.
Clostridium difficile, known as C. diff is a germ that can multiply in the gut and colon when patients take some antibiotics to kill off other germs. It can easily spread through contaminated surfaces or hands. While it can be treated by antibiotics, C. diff can also become so serious that some patients need to have part of their intestines surgically removed. C. diff can cause diarrhea and can be deadly for the elderly and other vulnerable patients. Learn more about this illness and treatments at the Peggy Lillis Foundation and at The Fecal Transplant Foundation
Fluoroquinolones are one of the most commonly prescribed classes of antibiotics. Some common brand names are: Avelox, Cipro, and Levaquin. They are very powerful medications often wrongly given as a first line of defense against a wide variety of routine infections. The Quinolone Viligance Foundation has a wealth of information on this class of drugs.
The Caregiver Action Network is a family caregiver organization working to improve the quality of life for the than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. In conjunction with their work, they have a related website devoted to Caring for Rare Disease Caregivers and they are part of a collaboration of organizations with a website that focuses on Cancer - Help for Cancer Caregivers.
The Maternity Neighborhood is a site where products and partners are coming together to deliver and scale innovations that transform maternity care.
Medically induced trauma support services www.mitss.org
VOCA Victims of chiropractic abuse ... more
Reach Your State and Federal Representatives
We encourage our readers to reach out to their representatives to share their concerns and thoughts regarding healthcare in Connecticut and across the nation. We have provided the following link to help you in this endeavor.
Find your US Congressional Representatives
Reading List for Patients and Advocates
This page includes information on books and publications that support and further efforts to improve the quality of healthcare and to protect the rights of injured patients. Read more
Health Care Apps
www.doctella.com If you are having surgery or a medical procedure and looking for questions to ask your doctor and things to consider, this app may be helpful. Doctella helps you be a partner in your care by providing tools to: Help you ask your doctor important questions, Get organized before your procedure and to Potentially Reduce errors in your care. It is free and available on the web and as an Apple and Android App.
Connecticut Center for Patient Safety (CTCPS) does not endorse or recommend any products, processes, or services. CTCPS believes that no one source of information should necessarily be relied on as the sole basis for health care related decisions and choices. Furthermore, the listing of resources by CTCPS may not be used for advertising or product endorsement purposes.
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