Patients Are Powerful

Archive for the ‘patient advocacy’ Category

Most people have not heard of the Bone and Joint Decade, but it’s an important and valuable organization sanctioned by the United Nations/World Health Organization that deserves more recognition. As a chiropractor, I have been aware of it for several years now. It is an international collaborative movement whose mission is to improve the quality of life for people with musculoskeletal conditions and to advance the understanding, prevention and treatment of these conditions. The organization if open to a variety of traditional and alternative methods of prevention and treatment, including chiropractic, and is highly supportive of the role of the patient advocate. In that regard, the United States Bone and Joint Decade (USBJD) begins its exceptional program for its 2009 Global Network Conference to be held in Washington, D.C., starting today through Saturday, October 21-24. The conference will bring together the official Bone and Joint Decade National Action Network (NAN) representatives from 56 countries, members of the administration, government policymakers, health care providers, patients, and patient advocates for a two-day Patient Advocacy Meeting and a two-day Global Network Conference. Featured program participants include Sens. Chuck Grassley (R-Iowa) and John Barrasso (R-Wyo.), Congressmen Charles Rangel (D-N.Y.), Dave Camp (R-Mich.), and Charlie Melancon (D-La.), and Colin Carrie, Parliamentary Secretary for Health of Canada.

The Global Network Conference is an education and strategic planning meeting intended to highlight the significant burden of disease posed by musculoskeletal conditions and why raising awareness and engaging in advocacy are important means of advancing prevention and treatment. On October 22, there will be a focus on raising awareness of musculoskeletal conditions on Capitol Hill for U.S. delegates, patients, and the leadership of USBJD participating organizations.

Among our successes, The United States Bone and Joint Decade includes among its successes the development of programs around osteoporosis and arthritis that have been presented to more than 200 audiences, as well as a grant mentoring program that has seen their graduates receive more than $20 million in research funding.

For more information, visit www.usbjd

Technorati Tags: arthritis, musculoskeletal conditions, osteoporosis, US Bone and Joint Decade

Have you heard the term, “anesthesia awareness”? If so, do you know what it means? I thought that I did, but today I became more “enlightened.” Anesthesia awareness is a very real phenomenon of being left fully awake and aware, yet completely paralyzed, during general anesthesia surgery. As a chiropractor, naturally I’d heard the term before and assumed that it only occurred rarely. But, today I read that it happens to 100-200 people per day in the US alone! That is a shocking figure! The good news is that there is a dedicated patient advocate who, through the Anesthesia Awareness Campaign (a nonprofit patient advocacy organization), works with victims of anesthesia awareness, tries to consummate change in the anesthesia system, endeavors to make the public “aware of awareness,” and advocates for the use of brain activity monitors in every general anesthesia surgery.

For almost twelve years, Carol Weihrer has been working to educate medical professionals and the public, as well as conducting patient outreach and support. What inspired this kind of commitment? Anesthesia awareness happened to Carol Weihrer during a 5½-hour surgery to remove her eye. Immediately after her experience, Ms. Weihrer, working alone, found a mission in life to find ways to prevent and treat this “terror of all terrors.” The result was the founding of The Anesthesia Awareness Campaign.

For more information on anesthesia awareness, please visit www.anesthesiaawareness.com.

Technorati Tags: anesthesia awareness, Anesthesia Awareness Campaign, Carol Weihrer

If you’ve never visited the Kalaupapa peninsula on Molokai, it’s an experience you won’t forget. I had a chiropractic practice on Oahu for nearly ten years before I visited the island. I can attest to its beauty. The Kalaupapa peninsula is one of the most beautiful places on the planet. It’s surrounded by the ocean, of course, and the highest sea cliffs in the world. But its beauty is not what will stay in your mind and heart once you’ve been there. What you will take away is the story of Father Damien, one of the greatest “patient advocates” who ever lived.

In the 1880’s there was no treatment for Hansen’s disease, also known as leprosy. People who had the disease were taken from their homes and exiled on the isolated peninsula of Kalaupapa, which was only accessible by boat. They were treated as outcasts until a Belgian priest, Father Damien, arrived to care for them. He eventually contracted the disease himself and died.

On Oct. 11th, he will be canonized as a saint, and some of the last remaining Kalaupapa residents are in Rome for the ceremony.

There have been several books written about Father Damien. But, a brief account of his life, along with photos, and more information on his canonization can be found at: voanews.com

Technorati Tags: Father Damien, Hansen's Disease, leprosy, sainthood

I have to say that as a patient advocate,  I’ve done a lot of thinking about chiropractic marketing.  Why? Well, maybe my view is skewed a bit, but I don’t like to think of doctors, especially alternative doctors like doctors of chiropractic, as “business people,” anymore than I like to think of my minister that way. And, of course, altruistically, we as patients want to believe that those who’ve studied chiropractic medicine didn’t do it  “for the money.” But, these days there seems to be a whole lot of chiropractic marketing going on, especially on the internet.

However, realistically, I know that chiropractors, like any other professional, can’t do what they love to do, i.e., help people to feel better, get out of pain, and get their life back again, without the money necessary to keep their offices open.

So, I’m going to “lighten up” my attitude towards the business needs of all chiropractors, including my own. What helped me to be more open, and less judgmental, was an article I read recently indicating that medical doctors (who, let’s face it, we’ve all sort of viewed as being influenced by the financial gains of mainstream medicine) are finding themselves “business-challenged.” That’s right! Physicians who are going to business school to get their MBA. Apparently, nationwide more doctors are finding it both useful and necessary to add business fundamentals to their core of medical know-how, according to health care organizations and observers.

The effort encompasses more than just learning tools for helping doctors run their offices; it is about reclaiming their voice in a sector that has become dominated by nonmedical professionals, such as managed care firms, professional administrators and accountants. “Physicians nowadays need to appreciate and understand business concepts and thinking,” said Dr. James Anderson, a Cornerstone Health Care pediatrician and member of the practice’s board who is working toward a business degree. “The way we train in medicine and the way we approach problems in medicine is different than in the business world.”

The conviction that physicians can no longer be blind to the ways of business is at the center of Dr. Bill Applegate’s efforts to retool the curriculum at Wake Forest University School of Medicine. Applegate, dean of the medical school, said he intends to take “a slice” of Wake’s Babcock Graduate School of Management content and implement it for the medical campus’ doctors in training. He figures it may take another two years for it to happen.

Patients are powerful. If we support the efforts of chiropractors, and medical doctors, too, for that matter, to take care of business. Then, when it comes to health care costs, we will be dealing with the very professionals who offer the care, rather than big insurance companies who are definitely “in it for the money.”  In fact, I’m looking at my chiropractor in a whole, new way: He maintains the “heart of a doctor,” but he also has the mind of a business professional.

Technorati Tags: chiropractic marketing, patient advocacy, patient issues

As a Colorado Spring chiropractor I am very familiar with the issue of patient privacy. This is a summary of a news story out today.

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WASHINGTON — The push for universal electronic health records, a long-simmering issue in the healthcare debate, is gaining fresh momentum with the new administration and Congress, but privacy concerns continue to confound policymakers.

President Obama has set a goal of digitizing every American’s health record by 2014, and he included $19 billion to that end in the economic stimulus package.

But the question remains, how do health IT providers ensure that patients remain in control of their most sensitive personal data in a digital healthcare regime?

At the Computers, Freedom and Privacy conference today, a panel of experts took up that question, acknowledging that it doesn’t really have an answer at this point.

“This is one of those issues that has been going round and round and round for years,” said Joel Slackman, managing director at the BlueCross BlueShield Association.

But in the case of the stimulus money, that debate is going to be cut short.

“The time in which things have to be done is incredibly compressed,” Slackman said.

The IT provisions in the stimulus bill amended the Health Insurance Portability and Accountability Act, broadening its scope to cover tech firms offering personal health portals.

“I don’t know if we’ve gotten there yet,” Torres said.

The advent of the Web-based personal healthcare portal was greeted with significant privacy concerns.

“At Microsoft we decided very early on with our HealthVault product that consumers should control what goes in, who sees it going out,” Torres said.

Torres said that patients can control the information that is entered into their files, as well as which doctor gets to see it.

The appropriate granularity of these controls is one of the thorniest issues facing policy-makers as they set privacy rules for e-health records.

“Consent is the 800-pound gorilla for medical privacy,” said Ashley Katz, executive director of the advocacy group Patient Privacy Rights.

The prospect of bringing IT firms into the business of managing medical records can also introduce a significant challenge in ensuring compliance with a bewildering complex of state laws.

“You don’t even know that a law’s conflicting until it smacks you in the face, sometimes,” Slackman said.

Technorati Tags: patient advocacy, patient privacy, patient rights

Great article with tips for patients below. As a San Diego Chiropractor I feel it is important for patients to learn how to navigate the current healthcare system as it leaves much to be deisred. Good luck Ms. Boden and Dr. Hallisy.

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by Victoria Colliver, Chronicle Staff Writer

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Adriana Boden was a healthy 33-year-old woman until one day in March 2007 when she felt like an explosion went off in her head. Although she went to her doctor immediately, it would take nearly a year of doctor visits, diagnoses of everything from migraine headaches to encephalitis, unnecessary drugs and treatments before a physician finally figured out what was wrong with her.

It was a relatively simple test – one that Boden, through her own research, suggested and was eventually ordered by a physician who listened to her – that led to her diagnosis of epilepsy.

Boden, a sales manager at Google Inc. in Mountain View, wants to take what she’s learned and use her technological know-how to help other patients better navigate the fragmented health care system.

Along with San Francisco dentist and author Julia Hallisy, she founded a nonprofit organization and Web site called the Empowered Healthcare Community, which will officially premiere at a conference in San Francisco on May 16.

Many Americans – even those with insurance and access to care – are frustrated by the U.S. health care delivery system.

Boden said there were many things she wished she had known at the onset of her illness that could have helped or shortened her search for a diagnosis and cure.

She formed the organization in part because most of the patient advocacy and networking groups she found were specific to certain diseases or didn’t offer her the kind of help she needed.

“I want to give people confidence and help them find the courage to help themselves,” she said.

Hallisy, the group’s co-founder, spent virtually her daughter’s entire life – from the time she was diagnosed with cancer at five months until her death in 2000 at age 10 – pursuing the treatment her daughter needed.

Hallisy last year published “The Empowered Patient” to give patients practical tips about their rights and safety issues.

“Our goal for the organization is to give patients an unprecedented level of information they don’t have access to,” she said.

Boden’s physician, Palo Alto internist Darren Phelan, said patients and doctors need to work together now more than ever due to the information age.

Doctors, he said, have a tendency to get stuck in the patterns they know.

“You can search on the Internet and find a study that will support or refute a lot of things,” he said.

The conference is open to the public and registration is $80.

Have a health advocate.

No news is not necessarily good news.

A second – or third or fourth – opinion is appropriate at any time during your treatment, not just in the early stages of diagnosis.

Be aware that federal law guarantees patients access to their medical records.

Always check your medications for drug interactions.

If you need surgery, find out information about your hospital at the U.S. Department of Health and Human Services site at hospitalcompare.hhs.gov.

If you are having surgery, ask your hospital to use the World Health Organization surgical checklist.

Technorati Tags: health, health care, patient advocacy, patient rights

Post from Healthcare300.wordpress.com

As health care providers we are always taught to not let our emotions regarding any particular subject interfere with our ability to treat a patient.  Easy enough concept perhaps, but actually following through with that thought is sometime difficult.  What happens when a health care provider, a nurse or a doctor lets their feelings about a patient or patient’s actions drive their care decisions?  Well, typically it plays out against the patient’s best interest.

Patients that present to local emergency departments that are suspected of drug seeking are often ignored by providers in hopes that they will become so frustrated with waiting that they will just leave the ER. Other times care will be purposely delayed for patients that are rude, “whiny”, or in some other way annoying.  Providers will often minimize a patient’s level of pain and health and not offer analgesics even though they are told by the patient that they hurt.  This is often seen when patients come in to an ER setting in a histrionic state.

Letting value judgments about patients or patient’s actions drive care decisions in most cases would be considered counterproductive.  Health care providers must continually evaluate their own biases and look beyond the realm of their own perspectives and focus on treating the patient appropriately.  Frequently the only way to combat this prejudice is to have a patient advocate.  Family members are often advocating for their loved ones with health care providers. In several other instances nurses play a huge part in patient advocacy. The issue here is that providers are not always in tune with the needs of their patients.  Call it being human, call it something else. The fact remains that whether or not providers have biases toward patients should be irrelevant when it comes to making care decisions.

Technorati Tags: ER, health, health care, patient advocacy

Honolulu Chiropractor: It is unbelievable to me that it is legal to  prescribe psychiatric drugs that have not gone through clinical trials for children. I was so glad to read this article and see some states starting to take action.

States focus on limiting psychiatric drugging of kids

The Texas legislature is considering a bill that would require doctors to get prior approval before prescribing atypical antipsychotic drugs like Zyprexa, Risperdal, Invega, Abilify, Seroquel and Geodon to children under 11 who are covered by Medicaid in that state, the Dallas Morning News reported on April 1, 2009.The reports on Texas foster childrenin recent years provide evidence to support such a bill.

The atypicals are the most expensive psychiatric drugs on the market and children all across the US have become the target of the off-label marketing campaigns of their makers.

The atypicals are being prescribed more often than antidepressants to children in foster care for everything from ADHD to depression to sleep problems. A report on Texas foster children for the year 2005 has a list of the top ten drugs prescribed to children ages 6 to 12, and Seroquel and Risperdal combined beat out the two antidepressants on the list.

In the three-year-old toddler age group, Seroquel and Risperdal combined were prescribed 115 times.

With infants, age 0 to 2, Risperdal and Seroquel prescriptions had a combined total of 28.

In May 2008, a group of New Hampshire legislators wrote to the state’s attorney general asking for a criminal investigation of the atypical makers after learning about the increasingly large amounts of spending by Medicaid for children on the drugs.

Atypical antipsychotic drugging “of children in the Granite state has skyrocketed from under $300,000 in 2000 to nearly $4 million in 2007,” the letter states.

“As you are likely aware, antipsychotics are psychiatry’s most powerful medications with very little FDA approval for children and include side effects ranging such as early death, diabetes, heart failure, psychosis, permanent muscle spasms and more,” the lawmakers pointed out.

They noted the $515 million civil settlement the DOJ entered into with Bristol-Myers Squibb for illegally marketing Abilify for off-label uses and the settlements between private plaintiffs and Eli Lilly for “causing diabetes in 28,500 people with Zyprexa.”

“Any ordinary citizen would minimally be charged with manslaughter or second degree murder for such criminal negligence,” the letter advised.

“It is very important to take such criminal actions as the civil actions merely appear to be write-offs as business expenses to drug manufacturers in cases like Vioxx, OxyContin, Neurontin, Paxil and those mentioned above,” the lawmakers pointed out.

“A criminal deterrent is needed to protect our children and others placed on powerful medications,” they stated.

Last September, attorney Jim Gottstein, the leader of the patient advocacy organization, PsychRights, filed a lawsuit against the state of Alaska seeking to bar the state from paying for off-label prescriptions of all psychiatric drugs to children covered by Medicaid in Alaska.

Evelyn Pringle

(Evelyn Pringle is a columnist for Scoop Independent News and an investigative journalist focused on exposing corruption in government and corporate America)

Technorati Tags: children, off label use, psychiatric drugs

As a former Michigan resident and current California resident, this Santa Barbara Chiropractor, while I’m happy with the decision to allow medical marijuana, I am concerned that patients will not be able to get access to marijuana when needed. This is the current situation.

State health officials are finalizing rules and regulations for the Michigan Medical Marijuana Program.

Step one: issuing picture ID cards for those on the marijuana registry; they should begin arriving by the end of April.

Caregivers, who can supply marijuana to a maximum of five patients, will also have to pay $100 for ID cards under a program the state hopes will be self-supporting and require no taxpayer dollars.

One thing the state won’t do is provide the marijuana or even tell patients how to acquire it on their own.

And possession of marijuana remains a federal crime, although the Obama administration has said that it likely won’t prosecute users in states where the drug’s use for medicinal purposes has been approved by voters.

To get on the confidential marijuana registry, patients must get a letter – not a prescription – from a Michigan-licensed physician certifying that pot could benefit their medical condition.

The law covers people with “debilitating” medical conditions, including cancer, glaucoma, HIV/AIDS, hepatitis C, amyotrophic lateral sclerosis, Crohn’s disease, Alzheimer’s disease, and chronic diseases, or their treatments that produce wasting syndrome, severe pain, severe nausea, seizures or severe muscle spasms, such as those caused by multiple sclerosis.

Greg Francisco, executive director of the nonprofit patient advocacy group Michigan Medical Marijuana Association, said some doctors are refusing to go along with the new law.

“Many doctors are skeptical and reluctant to get involved in this,” said Francisco, whose wife mixes marijuana into brownies that she bakes to ease his back pain from atrophied muscles, the result of childhood polio.

“The larger, mega corporation health clinics associated with hospitals are refusing, based on corporate policy,” said Francisco, whose group is based in Paw Paw, in southwest Michigan.

The Michigan State Medical Society, which opposed the ballot proposal, has sent out a “legal alert” to its 16,000 physician members advising them that “a physician should use his or her best judgment whether they want to recommend that a patient get a registry card,” said David Fox, spokesman for the group.

The new law shelters participating doctors from arrest, prosecution or any professional penalties for recommending marijuana use.

Doctors cannot write prescriptions for marijuana since the U.S. Food and Drug Administration classifies it as an illegal, controlled substance like heroin and LSD, with no medical use and a high potential for abuse.

The Michigan doctors’ group does favor more research to establish what, if any, medical use marijuana may hold.

More problematic is the question of legality.

The U.S. Drug Enforcement Administration regards marijuana users, even in states that have medical marijuana statutes, as lawbreakers.

But as a practical matter, the feds have not gone after medical marijuana users in states with those laws.

Francisco said that when he was a federal law enforcement officer with the U.S. Coast Guard, “we didn’t bother with nickel-and-dime drug use by recreational boaters.

“Sheriffs and prosecutors are telling us that like it or not, they will go along with the new law,” he said. “It’s like the speed limit.

Shanon Akans, spokeswoman for the Michigan State Police, agreed.

“It’s not going to have a huge effect on us,” she said. “As long as medical marijuana patients comply with the law (limits on amounts and not giving or selling marijuana to people not on the state registry), they won’t have an issue with law enforcement.”

Despite the law, it’s up to employers to decide whether to prohibit medical marijuana users from smoking in the workplace.

The new law bans pot use in public places. And it will remain illegal for patients to use marijuana while operating a motor vehicle, aircraft or motorboat.

Unlike a constitutional amendment that can only be undone by a vote of the people, the medical marijuana law is a citizen initiative.

That means the Legislature is free to modify or outright repeal the law after two years.

Meanwhile, Francisco said his group is planning an application rally at the Michigan Department of Community Health on Monday.

“We’re asking patients to come to Lansing and caravan to hand-deliver the applications,” he said. “We’re planning on a mass turnout so we can turn this into a media event.”

For the full article, see Charlie Cain, “Michigan readies for medical pot use: Up to 50,000 may qualify for legal smoking”, Detroit News, April 1, 2009.

Technorati Tags: medical marijuana, Michigan, patient advocacy

As a Fort Worth Chiropractor I am concerned that this budget situation in Washington State will soon be affecting us here in our state.

Washington State Budget Cuts Endanger Registry for Living Wills.

What good is your living will if your doctor can’t get to it in an emergency?

That dilemma spurred Washington in 2007 to create a free electronic registry of health-care directives, legal documents containing a person’s end-of-life wishes. In little more than a year, nearly 600 state residents have registered at the site so that physicians can quickly look up whether a patient has opted to refuse respirators, feeding tubes and other life-prolonging treatments.

Gov. Chris Gregoire has proposed slashing the registry’s $180,000 annual budget by 80 percent. That won’t leave enough money, patient advocates fear, to keep the registry viable. In fact, registry supporters argue the proposed cuts could well cost the state more money in the long run if patients are given expensive treatments they did not want. Miller said registry sign-ups have accelerated since the passage of Initiative 1000, which legalized physicians prescribing lethal doses of drugs to people with less than six months to live.

In the five months since Washington voters approved the so-called Death with Dignity Act, the pace of enrollment in the registry rose by 18 percent compared to the previous five months. In case of accidents or a coma, patients may be unable to alert medical professionals that they do not want CPR, artificial ventilation or other treatments, Miller said. “Doctors are reluctant to make a decision that’s going to result in the death of a patient.”

People who enroll in the living-will registry carry wallet cards with an identification number that allows qualified medical professionals to look up their directives on a secure Web site. Miller said even one critically ill patient who is revived against her wishes and ends up in intensive care could rack up more needless treatment costs in a few days than the registry’s annual budget. Kate White Tudor, a lobbyist for Compassion & Choice, said $70,000 a year would enable the registry to continue accepting new registrants, although customer support would have to be cut back.

Source: Seattle Times

Kyung Song: 206-464-2423 or ksong@seattletimes.com

Technorati Tags: fort worth chiropractor, patient advocacy, Washington State budget cuts