Resources

Articles  |  Audio & Video  |  Organizations |  Elder Care

 

Articles

Guardian on Facebook: Features a preview of the Guardian Private Patient Advocate blog that will be available here soon . The facebook page contains many of the articles listed here as well as some that have not yet been added to this page.

Patient Safety from Wikipedia

National Patient Safety Foundation: Patient Safety Dictionary

National Patient Safety Foundation: Universal Patient Compact

How Not to Die, The Atlantic

U.S. Health in International Perspective, Intitute of Medicine

Patients Like Me

Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis, Intitute of Medicine

The Remarkable Risk of a Disconnected Health Care Environment, Dr. Andrew Watson

Placing the patient front and center, American Psychological Association

The Medical Home: Growing Evidence to Support a New Approach to Primary Care

MedlinePlus interactive health tutorials from the Patient Education Institute.

What is the Patient-Centered Medical Home?

Health Care In America Trends in Utilization US Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics

What one thing would transform the way you practice medicine?

Medical Reversal: Why We Must Raise the Bar Before Adopting New Technologies Yale Journal of Biology and Medicine December 2011

The Frequency of Medical Reversal JAMA Internal Medicine Vina Pradesh, MD; Victor Gall, MD; Adam Fanciful, MD Oct 10, 2011

The Case for Intervention Bias in the Practice of Medicine Yale Journal of Biology and Medicine

AACR Cancer Progress Report 2013

Why we must keep track of errors in electronic medical records Scientific American By The Editors October 29, 2013

Personal health record: A tool for managing your health.

PHR (Personal Health Records)

After a Diagnosis, Someone to Help Point the Way   New York Times LESLEY ALDERMAN September 11, 2009

Audio and Video

Healthcare 411 news series from Agency for Healthcare Research and Quality

The Health Report presented by Dr Norman Swan The program covers wide-ranging topics and issues, among them: cancer, endocrinology, epidemiology, exercise, gastroenterology, gynaecology, health education, mental health, nutrition, obstetrics, paediatrics, physiotherapy, and rheumatology.

Where Medical Errors Occur and How to Avoid Them presented by Dr. Carolyn M. Clancy, M.D.From the series 'Navigating the Health Care System' by the Health Care System feature Agency for Healthcare Research and Quality (AHRQ)

 

Organizations

Patient-Centered Outcomes Research Institute (PCORI)

PatientsLikeMe
PatientsLikeMe is a health data-sharing platform that we believe can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care. www.patientslikeme.com

Association of Cancer Online Resources (ACOR):  www.acor.org/ offers access to 159 mailing lists that provide support,  information, and community to everyone affected by cancer and related disorders. 

Center for Advancing Health (CFAH): .
CFAH conducts research, communicates findings and advocates for  policies that support everyone ʼ s ability to benefit from advances in health science. www.cfah.org

Center for Medical Consumers: 
Is committed to broadening public awareness about the safety and  quality problems that pervade America ʼ s medical care. The Center is active in both nationwide and statewide efforts to reduce  medical errors, report disclosure of physician conflicts of interest, improve the quality of medical care, and encourage public  access  to information about the comparative performance of doctors and hospitals. medicalconsumers.org/ .

Coalition for Patients Rights: 
The Coalition for Patients ʼ Rights consists of more than 35  organizations representing a variety of licensed health care professionals who provide a diverse array of safe, effective, and  affordable health care services to millions of patients each year. www.patientsrightscoalition.org/ .

Consumers Advancing Patient Safety (CAPS):
Is a consumer-led nonprofit organization formed to be  a collective voice for individuals, families and healers who wish to prevent harm in healthcare encounters through partnership  and  collaboration. www.patientsafety.org/

The Empowered Patient Coalition:
The Empowered Patient Coalition is dedicated to  providing an unprecedented level of information, resources and educational support to the public. The Coalition is committed to  promoting a culture of transparency, meaningful interaction and active participation that will allow patients and their advocates to  assume a greater role in improving the safety and the quality of their health care. www.empoweredpatientcoalition.org/

Empower: .
Empower is a website that seeks to provide information for women dealing with health  problems and enables women to connect with others in a large peer-to-peer community. There also is information dealing with diet  and general well-being. www.empowher.com/

E-patient Dave: 
is the blog of Dave deBronkart, who was diagnosed with Stage IV Leukemia in  2007 but defied the odds and beat the disease. He blobs about the need for patients to be informed and empowered in dealing with  the health care system. patientdave.blogspot.com/

Every Patient's Advocate
Every Patient's Advocate has one important purpose-to help patients learn everything they can about  advocating for good health and medical care for themselves or their loved ones. 
www.everypatientsadvocate.com

Hospice Patients Alliance has ten key questions for patient advocacy: 
www.hospicepatients.org/10-essentials-pt- advocacy

Informed Medical Decisions Foundation

The Informed Patient Institute: 
The Informed Patient Institute(IPI) is an independent  not for profit organization that provides credible online information about health care quality and patient safety for consumers.
www.informedpatientinstitute.org/

National Patient Advocate Foundation:
Dedicated to improving access to health care through policy reform at the state and federal  government levels.  www.npaf.org/

Patient Advocate Foundation: 
to provide effective mediation and arbitration services to patients to  remove obstacles to healthcare including medical debt crisis, insurance access issues and employment issues for patients with  chronic, debilitating and life-threatening illnesses.  www.patientadvocate.org/

Revolution Health:
counterrevolutionary/pages/nonprofit-organizations
Oftentimes, Patient Advocates are associated  with particular diseases, such as the American Cancer Society or American Heart Association. A master list is found within the  website of Revolution Health.

Society for Participatory Medicine: .
Is devoted to promoting the concept of participatory medicine  by and among patients, caregivers and their medical teams and to promote clinical transparency among patients and their  physicians through the exchange of information, via conferences, as well through the distribution of correspondence and other  written materials. participatorymedicine.org/

Elder Care Resources

(taken from the New York Times By JANE GROSS)

Government Sites

Medicare. An all-purpose site with interactive tools for planning and paying for long-term care and choosing among drug plans. Includes searchable inspection results, good and bad, for the all the nation's skilled nursing facilities.

NIHSeniorHealth.gov. A collaboration of the National Institutes of Health and the National Library of Medicine that provides authritative information on all diseases and disorders of old age. Each section is available in both large-type and audio versions.

National Institute on Aging. Describes ongoing research on aging and lists clinical trials seeking participants.

U.S. Administration on Aging. Brief fact sheets on aging and links to outside resources for an assortment of caregiving issues, including financial planning, residential options, in-home services, case management and the law.

CarePlanner. Free worksheets help users to create a care plan, keep track of medications and expenses, and plan home modifications.

Govbenefits.gov. A tool to help determine benefit eligibility for a variety of government programs.

Housing and Services

American Association of Home and Services for the Aging. Consumer information on senior housing from an association of non-profit nursing homes, assisted living centers, continuing care retirement communities, adult day care centers and the like.

Assisted Living Federation of America. Among other resources, offers a database of assisted living facilities searchable by location or parent company.

National Center for Assisted Living. Provides a more elaborate "facility finder" that factors in cost, method of payment, mobility, dietary needs, activities and amenities.

SNAPforSeniors. Offers a searchable housing locator with 60,000 listings, including facilities for assisted living, residential care, nursing care and rehabilitation, continuing care retirement and independent living. (Disclosure: A New Old Age partner.)

National Association of Professional Geriatric Care Managers. Search for a geriatric care manager by location.

Visiting Nurse Associations of America. Search for home health services nationwide. Includes suggested questions to ask service providers.

Homemods.org. Advice on home renovation from the University of Southern California.

UCompareHealthCare. Free search by location for nursing homes, plus data on quality, staffing and outcomes from government sources. (Disclosure: Owned by The New York Times Co.)

Getcare.com. A sleek, three-step process to assess long-term care options, learn about each type, and then search by location for a variety of services, including Alzheimer's day care, grief support or respite for a caregiver.

TheSeniorGuide.com. Search by state and region for all types of senior housing, case managers, lawyers and more. Includes a glossary of industry jargon.

National Association of Senior Move Managers (NASMM). A not-for-profit, professional association dedicated to assisting older adults with the physical and emotional demands of downsizing, relocating, or modifying their homes.

CareScout. Charges $499 to help users select housing options and services for the elderly who can pay their own way and are not reliant on Medicare or Medicaid.

A Place for Mom

Caregiving

Family Caregiver Alliance. Offers tips on a wide range of topics, including how to hire help, hold a family meeting, balance work and caregiving, find important papers, and decide whether parents should move in with an adult child.

National Alliance for Caregiving. Reviews of more than 1,000 books, videos, Web sites and links.

National Family Caregivers Association. Provides statistics, research and policy reports, tip sheets, first-person accounts, a newsletter and an exhaustive resource list.

Family Caregiving 101. A separate "how-to" site by the NFCA with advice on time management, asking for help, navigating the health care maze and communicating with insurance companies and hospitals.

MetLife Mature Market Institute. Reports from a research arm of the insurance company on the price of assisted living, the strains of long-distance caregiving, and the cost to employers of baby boomer employees involved in eldercare.

Strength for Caring. A site for family caregivers from Johnson and Johnson with original articles written by experts and how-to materials.

The Alzheimer's Association.

Elderweb. An eccentric site that includes the history of long-term care policy in America, census maps that show the concentration of people 60 and over, book reviews, updates on state laws affecting the elderly, and a dictionary of eldercare jargon.

Eldercare Online. This site has a home-made look and is difficult to navigate, but includes a wealth of original and imported information.

Caring.com. An all-in-one site with advice on caregiving, long-term care, talking with elders and insurance issues.

National Care Planning Council. A work in progress from a couple who "didn't have a life for five years" while caring for four elderly parents. Now a membership organization advocating for long-term care.

Third Age. Articles, expert interviews, quizzes and discussion boards for caregivers.

Elder Issues. Some interesting articles on caregiving. Primarily the site for a company marketing online medical records for elderly persons.

Aging Parents and Eldercare. A commercial site with free access to same checklists, worksheets and on-line assessment tools found elsewhere. For sale are products like wheelchairs and incontinence supplies.

KaiserEdu. An educational site from the Kaiser Family Foundation. Includes a variety of slide tutorials and podcasts on financial and policy issues related to long-term care.

Legal and Financial

BenefitsCheckUp. A search tool developed by the National Council on Aging to determine eligibility for 1,300 benefit programs that help pay for medications, health care, utilities and so forth.

National Academy of Elder Law Attorneys. Search by location for members of the association. Provides questions to ask lawyers about qualifications and areas of expertise, and a wide-ranging resource list for the elderly.

Insurance Information Institute.

Reverse.org. A consumer's guide to reverse mortgages from a non-profit with no ties to the industry. Links to the AARP's calculator for choosing such policies.

ReverseMortgage.org. Similar calculator and search tool to find local lenders, with links to their Web sites.

Senior Law Home Page. Advice from a New York law firm on the legal and financial issues facing the elderly. state forms for powers of attorney, health care proxies and living wills.

U.S. Living Will Registry. Free state-by-state forms.

American Bar Association Aging Tool Kit. Offers a 10-step process for making end-of-life decisions with worksheets, suggestions and links.

End of Life

The National Hospice and Palliative Care Organization. An excellent search tool for finding a hospice, as well as guides on issues related to palliative care, including Medicare coverage and techniques for communicating end-of-life wishes.

Caring Connections. Contains of the consumer information from NHPCO and has state-by-state advance directive forms.

Compassion and Choices.

Hospice Foundation of America. Information on end-of-life issues, such as pain management. One section called "Caregivers Corner" has links, reading lists and a self-assessment tool for caregivers to analyze their own strengths and weaknesses.

Advocacy

Center for Medicare Advocacy. Detailed information about what Medicare covers, and how to enroll and, if necessary, appeal denial of claims.

Medicare Rights Center. A similar tutorial on how this government health care program for the elderly works. A link to the Kaiser Family Foundation's "Medicare 101" and a hotline for questions and complaints.

National Association of Area Agencies on Aging. Articles on caregiving, policy reports, and links to eldercare service agencies.

Emotional Support

Children of Aging Parents. Support groups, both online and face-to-face. Newsletter focuses on interpersonal matters like stress among siblings, caregiver depression and getting through the holidays.

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