Advocates
I'm passionate about people. I've spent my life in advocacy. People matter - whether or not we agree on the issue, people matter - Ann Marie Buerkle
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Patient groups are supposed to represent patients. But many have deep ties to industry.
Drop in on any of the fierce debates about drug prices or the need for new medicines in the US, and you’ll find patient advocacy groups right in the middle, speaking up for the sick. These organizations represent millions of people with diseases like cancer, MS, and diabetes, and they are among the first places people turn to for help when they get sick.
But new research sheds light on a disturbing problem with these organizations: Their deep ties with industry may be compromising their ability to serve the very patients they’re supposed to help.
A new study from the New England Journal of Medicine found that 83 percent of the nation’s top 104 patient advocacy groups —…
Resources
How To Be Your Own Healthcare Advocate
Smart, sensible and empowering. That’s how I describe – Trust Your Doctor, but Not That Much – Be Your Own Best Healthcare Advocate. Reina S. Weiner, the author of this new book, takes all of us on a journey to discover how to take control of our healthcare.
Medical Researchers Look to Enlist Patients as Partners
Scientists say it’s crucial to make long-term connections with study participants if they want to get the data they need.
Patient Advocacy Groups and the Healthcare Industry: Partnership or Peril?
Both patient advocacy groups (PAGs) and the healthcare industry are ultimately working toward the same goal: Better outcomes for patients. Each has its own way to get there, although sometimes their efforts do overlap. Depending on the circumstances, the overlap can present an opportunity for either partnership or peril. Let’s dig a little deeper to find out which one it is.
Patient advocates can save your money — and your life
A brand new profession that helps patients cope with the American healthcare system.
History of Breast Cancer Advocacy
During most of the 20th Century, a woman diagnosed with breast cancer underwent a radical mastectomy. Decisions were made by physicians, and women often learned of their cancer diagnosis when waking up from surgery, absent one breast. A public discussion about breast cancer – especially your breast cancer – was unthinkable.
Advice From Patients On A Study's Design Makes For Better Science
Comis says researchers used to design studies without any patient input, back in the day when patients tended not to question their physicians. But just as patients have gotten more involved in their own care, their advocates have become more involved in the technical discussions of study design.
Advocacy From the Edge
Carrie Fisher spent decades advocating for mental health treatment and against stigma. Here’s how we should honor her.
After a Diagnosis, Someone to Help Point the Way
These days, even a person well versed in medical lingo can become overwhelmed by the complexity of the health care system.
How to fight an outrageous medical bill, explained
Five patients tell us how they pushed back — and won.
New Voices in Medical Advocacy Often Are Patients
Parent-advocates of children with chronic conditions have long worked toward finding cures; adult self-advocates are shifting the focus to goals of independent work and living.
Patient Advocates Help Navigate Health Care
Patient advocates are springing up to handle everything from finding doctors for hard-to-diagnose diseases to negotiating medical payments with hospitals and doctors and pressing insurance companies to cover claims.
Patients’ Rights Should Be a Bipartisan Issue
Now more than ever, it is doctors’ obligation to speak up for the needs of our patients.
Study Reveals Potential Conflict Of Interest In Patient Advocacy Funding
Most patient advocacy groups get funding from the industry, a new study finds. That means they may have a conflict of interest when they are representing patients.
The Need for Patient Advocacy When You're Black in the Doctor's Office
Doctors tells us the most effective ways to advocate for a friend or family member.
What Exactly Is A Patient Advocate?
Patient advocates are many things. They are a diverse community advocating for those living with diseases. Sometimes patient advocacy starts with helping people get medical care or cope with adaptations to their life. But it tends to expand in today’s definition to political advocacy.
When Support Groups Make You Feel Worse
Support groups are meant to offer the insight of others who "get it," but for some people, they can be terrifying—or depressing.
Why You Might Need A Health Advocate Is Why You Might Need A Concierge Physician
Healthcare advocates are slowly becoming more common in part because of the current bureaucratic healthcare system. Your primary care physician makes for an exceptional healthcare advocate. The problem is that relatively few have the time or motivation to take on the role. In contrast, a large percentage of concierge medical practices will act as your healthcare advocates.
Patient groups are supposed to represent patients. But many have deep ties to industry.
More than eight in 10 patient groups take money from the medical industry.
AdvoConnection
This site provides access to patients advocates, patient navigators, case managers, elder care advocates, home health, medical billing advocates, legal and other forms of patient assistants who may be able to help you or your loved ones manage those many health care challenges
Every Patient's Advocate
Patient empowerment, advocacy, medical consumerism and tools to navigate the dysfunction of American health care.
Patient Advocate Foundation
The Process is Simple. Patient Advocate Foundation's Patient Services provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness.
Patient Advocates
PA provides health care, employee benefit and risk management services with specialized expertise in administering; designing and managing employer sponsored health plans.
Patient Navigator
When you’re diagnosed with illness or struggling to take care of a loved one, it is easy to feel overwhelmed and out of your depth. But you don’t have to do it alone. We’re here to help.
Planetree International
The Planetree model of care is a patient-centered, holistic approach to healthcare, promoting mental, emotional, spiritual, social, and physical healing. It empowers patients and families through the exchange of information and encourages healing partnerships with caregivers. It seeks to maximize positive healthcare outcomes by integrating optimal medical therapies and incorporating art and nature into the healing environment.
RN Patient Advocates
Our mission is to empower people in their health care through advocacy, education and guidance through the health care system.
Smart Patients
An online community where patients and their families learn from each other.
WiserCare
We help patients and providers make smarter, more confident treatment choices. We bring clarity to healthcare decisions.
Amputee Coalition
The Amputee Coalition of America (ACA) is a national, non-profit amputee consumer educational organization representing people who have experienced amputation or are born with limb differences. The ACA includes individual amputees, amputee education and support groups for amputees, professionals, family members and friends of amputees, amputation or limb loss related agencies, and organizations.
AvoidMedicalErrors.com
The mission of Avoid Medical Errors is to help you to stay healthy and to avoid becoming the victim of a medical error. You will receive critical information and tips to teach you, as a healthcare consumer, how to ask questions, be empowered, and to seek safe health care.
BeMedWise
The BeMedWise Program at NeedyMed’s mission is working to promote the wise use of medicines through trusted communication for better health
BenefitsCheckUp
Many adults over 55 need help paying for prescription drugs, health care, utilities, and other basic needs. There are over 2,000 federal, state and private benefits programs available to help. But many people don’t know these programs exist or how they can apply. BenefitsCheckUp asks a series of questions to help identify benefits that could save you money and cover the costs of everyday expenses.
Cancer Hope Network
Cancer Hope Network is a not-for-profit organization that provides free and confidential one-on-one support to cancer patients and their families. We provide that support by matching cancer patients and/or family members with trained volunteers who have themselves undergone and recovered from a similar cancer experience.
Cancer Support Community
Transforming the cancer experience through community and connection.
CancerCare
CancerCare is a national nonprofit organization that provides free, professional support services for anyone affected by cancer.
CancerConnect
CancerConnect is a comprehensive online resource center and social network for cancer patients and their caregivers. Since 1996, it has been providing best in class, disease-specific patient information, covering relevant topics such as latest treatments, management of side effects, clinical trials, and support groups.
Caregiver Action Network
The Caregiver Action Network is the nation’s leading 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.
Caring Bridge
Free, personalized websites that support and connect loved ones during critical illness, treatment and recovery.
CaringInfo
CaringInfo, a program of the National Hospice and Palliative Care Organization, provides free resources to help people make decisions about end-of-life care and services before a crisis.
Compassion & Choices
Compassion & Choices is a nonprofit organization working to improve care and expand choice at the end of life. As a national organization with over 60 chapters and 30,000 members, we help patients and their loved ones face the end of life with calm facts and choices of action during a difficult time.
ConsumerLab.com
Vitamins, herbs, and other supplements are not regularly tested by any government organization. Only ConsumerLab.com continually evaluates nutritional supplements in a laboratory environment. It also investigates problems with drugs.
Families USA
Families USA is a national nonprofit, nonpartisan organization dedicated to the achievement of high-quality, affordable health care for all Americans.
HealthinAging.org
Welcome to 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.
Lotsa Helping Hands
Seeing how earnestly friends wanted to help, and juggling the difficulty of organizing their assistance, we designed Lotsa Helping Hands with the understanding of how to bring together a variety of social circles and what a resulting community like this would need.
MediBid
MediBid is an online marketplace which is about quality, choice, and value. Many insurance companies show you no more than whether your doctor is “in-network” or not. MediBid allows you to see the training, education and experience of the doctor before you make your selection.
Medicare Rights
Medicare Rights Center (MRC) is the largest independent source of health care information and assistance in the United States for people with Medicare. Founded in 1989, MRC helps older adults and people with disabilities get good, affordable health care.
National Coalition for Cancer Survivorship
The oldest survivor-led cancer advocacy organization in the country, advocating for quality cancer care for all Americans and empowering cancer survivors.
National Partnership for Women & Families
The National Partnership for Women & Families is a nonprofit, nonpartisan organization that uses public education and advocacy to promote fairness in the workplace, quality health care, and policies that help women and men meet the dual demands of work and family.
NeedyMeds
NeedyMeds is a 501(3)(c) non-profit with the mission of helping people who cannot afford medicine or healthcare costs. The information at NeedyMeds is available anonymously and free of charge.
Patients Come First
By working together, we can make Canada a world leader in giving Canadians access to innovative new medicines and vaccines to prevent and treat a wide range of diseases. The Rx&D International Report on Access to Medicines looked at the accessibility of medicines available in Canada and compared the finding to 24 other countries. The results showed Canada ranked 20th out of 25, next to countries like Turkey and Iceland.
RxAssist
Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need. All in one place.
RxHope
RxHope is exactly what its name implies...a helping hand to people in need in obtaining critical medications that they would normally have trouble affording. We act as your advocate in making the patient assistance program journey easier and faster by supplying vital information and help.
SeventyK
SeventyK represents approximately 70,000 children, adolescent and young adult patients in this country who are diagnosed with cancer every year.
StupidCancer.org
Stupid Cancer is a non-profit organization that empowers young adults affected by cancer through innovative and award-winning programs and services. We are the nation's largest support community for this underserved population and serve as a bullhorn for the young adult cancer movement.
Timely Medical Alternatives
In 2003, Timely Medical Alternatives Inc. was formed to help Canadians, on long medical waiting lists, to take personal responsibility for their own medical care and Leave the queue. The need for private medical services is thriving in Canada. Timely Medical Alternatives can easily accommodate your needs for private medical services by providing you with options, referrals to hospitals, clinics and diagnostic imaging facilities.
Vital Options International
Vital Options International is a not-for-profit cancer communications, support, and advocacy organization with a mission, to facilitate a global cancer dialogue.
WEGO Health
WEGO Health is a mission-driven company connecting healthcare with the experience, skills and insights of patient leaders. We are the world’s largest network of patient leaders, working across virtually all health conditions and topics.
Well Spouse Association
Well Spouse is a national, not for profit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled. Well Spouse support groups meet monthly.
Alliance of Professional Health Advocates
If you are a patient navigator, advocate, case manager, health coach, eldercare, birthing or other health care assistant - or are considering a career as any form of health advocate, please take a look at our Alliance membership site which provides you with assistance to build your clientele and business, including helping patients find you to hire you. We support your business knowledge needs and help you start and grow your private, independent advocacy practice.
California Office of the Patient Advocate
Our site will give you tools to get the most out of your medical care, including a Report Card on the top HMOs and medical groups in California. Our goal is to help you make informed decisions about your health care and to become your own best advocate.
DiagKNOWsis Media
Since 2005, DiagKNOWsis Media has been developing tools and resources to help patients and caregivers improve their chances for better outcomes when they access the medical system.
George Washington Institute for Spirituality & Health
The mission of GWish is to foster more compassionate and caring healthcare systems and restore the heart and humanity to healthcare. We do this by developing education programs supported by scholarly and research-based initiatives which train physicians and other healthcare professionals to more fully integrate spirituality in their professional work with patients.
International Alliance of Patients' Organizations
IAPO is a unique global alliance representing patients of all nationalities across all disease areas and promoting patient-centred healthcare around the world.
National Alliance for Caregiving
The National Alliance for Caregiving is dedicated to providing support to family caregivers and the professionals who help them and to increasing public awareness of issues facing family caregivers.
National Association of Healthcare Advocacy
NAHAC is a non-profit healthcare advocacy organization dedicated to empowering advocates and consumers to navigate our healthcare system effectively.
National Patient Advocate Foundation
National Patient Advocate Foundation is a national non-profit organization providing the patient voice in improving access to, and reimbursement for, high-quality healthcare through regulatory and legislative reform at the state and federal levels.
Society for Participatory Medicine
The Society for Participatory Medicine is a 501(c)(3) not-for-profit organization devoted to promoting the concept of participatory medicine, a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.
Introducing Stitches!
Your Path to Meaningful Connections in the World of Health and Medicine
Connect, Collaborate, and Engage!
Coming Soon - Stitches, the innovative chat app from the creators of HWN. Join meaningful conversations on health and medical topics. Share text, images, and videos seamlessly. Connect directly within HWN's topic pages and articles.
