Participatory Medicine

participatory medicine

Participatory medicine is the emerging paradigm of health care. Dr. Zerhouni, Director of the National Institutes of Health, stated in an interview that the relationship between patient and doctor is changing rapidly. Previously, the patient assumed a passive role, receiving direction from an all-knowing doctor. The doctor is now expected to provide more explanation and communication with the patient and the patient is expected to become more literate and take a more active role in his or her own health.

Internet Use Resulted in the Emergence of the e-patient

The availability of the Internet allowed patients to access medical information that was previously unavailable. The medical establishment previously took the view that the lay person was generally unable to understand complex medical problems, so medical libraries and other sources of information were "off-limits." The Internet leveled the playing field, and the results were astounding. When individuals faced medical problems (their own or that of friends or relatives) and found the medical establishment inadequate to supply answers, they found an immense resource of information on the Internet.

Dr. Tom Ferguson was a prime mover in e-patient empowerment, and established the e-patient Scholars Working Group. His ideas were incorporated in a White Paper called "e-patients-how they can help us heal health care." According to Dr. Ferguson, the term e-patients describe individuals who are equipped, enabled, empowered, and engaged in their health care decisions.

Online Research: How Patients Find Answers not Available in Doctors' Offices

The Internet provides networks of support groups of people who have similar interests in particular medical conditions. The interaction among members results in an understanding of the disease that can be difficult for a person researching alone. A survey of members of online support communities found that online groups ranked higher than physicians for:
  • convenience
  • cost-effectiveness
  • emotional support/compassion/empathy
  • help with issues of death and dying
  • medical referrals
  • practical coping tips
  • In-depth information

The Internet is a particularly valuable resource to learn about state-of-the-art treatments at top treatment centers as well as to learn about treatment options. People with limited access to professional care may find that the Internet is the only resource to become informed about a medical condition.

Can the Medical Community Learn from Patient Research?

The explosion of medical knowledge can make it difficult for even specialists to keep up in their field. This is particularly true if the disease is rarely encountered. Physicians are so busy that they can really benefit from the input from their patient "junior partners."

The e-patients White Paper related the story of Norman Scherzer. His wife contracted a rare form of cancer that was initially misdiagnosed. Through online research he found a specialist that made the correct diagnosis as well as a clinical trial on an experimental drug. His wife was eventually cured. Scherzer established an online group with an impressive array of lay people and specialists who keep up-to-date with the disease. This model can be used for other diseases as well.

The sexual effects of Viagra were originally discovered by patients when they reported on the dramatic side effects of the drug originally designed for angina patients.

A New Journal to Study Participatory Medicine

The Journal of Participatory Medicine was established to create a forum where healthcare professionals, caregivers, and patients all could have a voice to contribute and these voices would be heard. As a result of this participation, a common language could be developed that would describe ideas that resonate among everyone. This communication could result in fresh perspectives brought to the table resulting in clearer understandings and new directions to take in delivering health care. The journal is committed to discover the best practices of participatory medicine and to test their effectiveness in improving health care and reducing costs.

How Can Participatory Medicine be Advanced?

Education is essential to teach people to take care of their own health, to research treatment methods, and to evaluate a doctor's performance. People need to be persuaded to take part in their own health by studies, narratives and reflections.

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Ocular Albinism

ocular albinism

The lack of pigment that defines albinism affects not only outward appearance, but ocular development, as well. Oculocutaneous albinism affects pigment in the skin, hair and eyes. Ocular albinism exclusively affects the development of the eye. In these patients, skin and hair pigmentation appears normal. People with both forms of albinism experience congenital visual problems associated with lack of pigment in the eye.

Albinism is a genetic condition. Because of this, and because of the complexity of the eye, treatment options for vision problems associated with albinism are limited. However, there are existing treatments that can improve patients’ vision, and recent research in gene therapy may give new hope to sufferers.

Vision Problems Associated with Albinism

According to Richard and Laura Windsor of the Low Vision Centers of Indiana (2004), the defining characteristic of ocular albinism is poor development in the center of the retina. This area, called the foveal pit, controls fine vision in a normal eye. Without the ability to focus properly, people with albinism may experience:
  • low visual acuity
  • nystagmus (eye shaking)
  • oscillopsia (disturbed vision in which fixed objects appear to move)
  • strabismus (crossed eyes or eyes that otherwise do not move together)
  • photophobia (sensitivity to light)
  • unusual head or eye movements compensating for variations in vision

There is no surgery or treatment that can correct the developmental defect in the retina of the eye. However, there are some treatments for the specific symptoms associated with albinism. Additionally, vision aids and other treatments that work for the general population can improve the visual acuity of albinism sufferers, as well.

Treatments for Ocular Albinism

While ocular albinism can result in varying levels of visual disability, sufferers can generally adapt well. The disorder is not degenerative, so vision problems that develop later can usually be attributed to the types of vision disorders, such as myopia and hyperopia, that are common in the general population. Treatments for the general population can be used for ocular albinism sufferers, as well. These include:
  • eyeglasses and bifocals
  • prescription sunglasses
  • contact lenses
  • magnifiers
  • surgical laser reshaping (LASIK)
  • lens implant
  • lens replacement

None of these, however, correct any of the congenital defects of ocular albinism. Surgery on the muscles that control eye movements can be used to correct strabismus and improve binocular vision. A similar surgery may be used to minimize nystagmus.

Hand-held telescopes, and bioptic telescope eyeglasses can help with the distance vision issues common in ocular albinism. While some of these devices can be bulky and make the wearer self-conscious, the BITA system is comparatively unobtrusive telescopic eyewear. Another company makes auto-focusing telescoping eyewear.

Research into Albinism

Albinism is a rare disorder that, according to the National Association of Albinism and Hypopigmentation (NOAH) affects approximately one in 17,000 people. Because ocular albinism is rare, non-degenerative, and its sufferers usually adapt well, there is very little research being done into therapies specifically for this condition. However, researchers are working on mapping the specific faulty genes that cause albinism.

Additionally, gene therapy has already been used to improve the vision of patients with congenital blindness. In 2008, researchers at the Children’s Hospital in Philadelphia successfully used gene therapy to improve the vision of three blind patients. While those patients suffered from a different vision disorder, the successful use of gene therapy as a treatment for that retinal disorder indicates that it may one day be used for ocular albinism sufferers, as well.

While there is no treatment specifically for ocular albinism, vision aids, surgery and the adaptability of those affected can minimize the impact of the vision disorder on patients with albinism. The successful use of gene therapy in treating a similar ocular disorder gives hope that a cure is on the horizon for the visual problems associated with albinism.

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Lyme Disease – Know the Signs and Symptoms

lyme disease

Lyme disease is an illness caused by bacteria from the species called Borrelia. This bacterium can live in the stomachs of deer and mice. When a tick feeds from an infected animal, they can become carriers of this bacterium. These ticks can spread the disease to a person by biting the skin thus allowing the bacterium to enter the human body. The disease cannot be spread from person to person. (Journals.uchicago.edu “Clinical Infectious Diseases,” accessed October 6, 2016).

Symptoms of Lyme Disease

Early symptoms of Lyme disease develop within days to weeks of the initial contact. The early symptoms include headaches, fever, weakness and fatigue. The area on the skin where the bacterium enter becomes inflamed with a red, circular, non-raised rash that eventually looks like a bull’s eye target. Not all patients develop this rash and the rash, swelling and redness can resolve on its own in about a month.

Other early symptoms may include muscle and joint stiffness and swollen glands or swollen lymph nodes. According to the Centers for Disease Control, “Lyme Disease”, most cases of the disease can be eliminated if treated early with antibiotics.

If the early symptoms are not treated, the disease can worsen and lead to more serious symptoms affecting other body systems. In a few weeks to months after the initial tick bite, the infection spreads throughout the body. The joints and the nervous system can become affected.

When the disease reaches the joints and nervous system, a person can experience numbness and tingling in muscles and pain and inflammation in the knees and other large joints. Other symptoms may include a stiff neck, light-headedness, confusion, nausea and vomiting and meningitis. Lyme disease can cause anxiety and extreme depression.

As symptoms progress, the patient can have blurred vision, drooping eyelids, sensitivity to light, dysfunctional movement and loss of muscle function. They can develop facial paralysis, also called Bell’s palsy, can experience hallucinations, can have speech impairment, can have decrease in consciousness and become unconscious.

The development of chronic arthritis, usually only in one or a few joints, is a common symptom of this disease. Other late symptoms of Lyme disease can be inflammation of the heart muscle causing palpitations and abnormal heart rhythm. If a patient is not treated effectively, Lyme disease can cause heart failure and death. (Mayoclinic.com “Lyme Disease,” accessed October 6, 2016).

Prevention of Lyme Disease
There are several defense measures that help prevent Lyme disease. One of these measures is to avoid any skin exposure while in areas where ticks live and thrive. These areas include wooded areas and areas with tall grass.

Another preventive measure is to spray exposed skin and clothing with insect repellent prior to engaging in outdoor activities. Other measures include wearing long-sleeves and long pants, and wearing boots while outdoors. Some ticks are very hard to see. Wearing light-colored clothes can help detect exposure.

Pets should be examined routinely for existence of ticks. If pets who acquire ticks play in or around an area where humans play in or around, these play areas should be treated with safe but effective products that eliminate ticks. Ticks should also be removed safely and effectively from pets.

Once back indoors, clothes should be removed immediately. Skin and clothes should be examined thoroughly. The hair and scalp should also be examined closely for ticks. It is also important to properly remove ticks.

If it is necessary to remove a tick from the skin, the area should be cleaned with soap and water immediately after removal. If a person feels like they are symptomatic of Lyme disease, it is important to get diagnosed early by a physician. Early treatment of Lyme disease is the most effective way to prevent it from becoming serious. (Cdc.gov “Lyme Disease Treatment and Prognosis,” accessed October 6, 2016).

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Methadone - Uses, Side Effects, and Withdrawal

methadone

Methadone is an opiate narcotic analgesic. Methadone has two main functions. It is prescribed to relieve moderate to severe pain in patients when non-narcotic pain relievers do not achieve adequate results. It is also used to prevent withdrawal symptoms and dependence in patients who are addicted to opiate drugs, such as heroin or morphine.

Methadone for Pain Relief

When used to treat moderate to severe pain, methadone works by changing the way the nervous system and the brain respond to pain. Methadone is considered an opiate (narcotic) analgesic.

Methadone is used every four to 12 hours to relieve pain. The prescribing physician will decided on the correct dosage based on the needs of the individual patient. Dosages may be increased or decreased depending on the level of pain relief achieved.

Methadone should not be stopped without first discussing this with the prescribing doctor. Doctors generally decrease the dosage to avoid any withdrawal symptoms.

Methadone for Treatment of Narcotic Addiction, Withdrawal, and Dependence

Methadone has been used for over 30 years to safely and effectively treat narcotic withdrawal and dependence. Heroin or morphine type drugs release an excess of dopamine in the body and cause users to need heroine or the drug of choice to continuously occupy the opioid receptor in the brain. Methadone works by occupying the opioid receptor and is the stabilizer to allow addicts to change their behavior and stop heroin or other opioid drug use by eliminating withdrawal symptoms.

Methadone suppresses narcotic withdrawal for 24 to 36 hours. It reduces cravings associated with heroin or other opioid drugs and blocks the high and does not provide an euphoric rush. Patients on methadone do not experience extreme highs and lows associated with different heroin levels in the blood stream.

Methadone withdrawal is slower than heroin withdrawal. Addicts on methadone do not experience the harsh side effects of heroin. Many patients require continuous treatment for several years.

Methadone treatment programs are highly regulated by the U.S. Food and Drug Administration. Patients on a methadone treatment program for opioid addiction are required to report to methadone clinics and physician offices to obtain doses of methadone.

Side Effects of Methadone

Methadone can cause a number of side effects. Any of the following side effects, if severe, should be reported to the prescribing physician:
  • weakness
  • headache
  • nausea or vomiting
  • loss of appetite
  • drowsiness
  • weight gain
  • vision problems
  • mood changes
  • difficulty falling asleep or staying asleep
  • swelling of the hands, arms, feet or legs
  • sweating or flushing
  • stomach pain
  • constipation
  • difficulty urinating
  • dry mouth
  • missed menstrual periods
  • decreased sexual ability or desire

Patients need to contact their doctor immediately if they experience any seizures, itching, hives, or have a rash.

Warning Regarding Methadone Usage

Methadone may cause an irregular heartbeat or slowed breathing, both can be life-threatening. Patients should contact their physician immediately if they experience:
  • difficulty breathing
  • extreme drowsiness
  • shallow or slow breathing
  • fast, slow, pounding, or irregular heartbeat
  • severe dizziness
  • faintness
  • confusion

The risk of these side effects is greatest when methadone is first used. Doctors may start a patient on a low dose and gradually increase the dose as the body adjusts to the medication.

Never take more methadone than prescribed. If taking methadone for pain management, pain may return before it is time for the next dose of methadone. Do not take an extra dose. Methadone can build up in the body and cause a life threatening side effect. Talk to the doctor if the pain medication is not lasting long enough between doses.

Considerations Regarding Methadone Use

Methadone is an effective treatment for patients in severe pain. It can be used safely and has shown positive results in opioid addicted patients.

Methadone should be stored in a safe place and never be used by a person that was not prescribed the medication. Keep track of how many tablets or how much solution is left to help determine if any is missing.

Always keep appointments with doctors, clinics, and laboratories. Physicians will need to check on every patient's response to methadone. Methadone is not a refillable prescription. Patients will need to see the doctor each time a prescription is needed.

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How to Protect Others When Someone Has Flu

flu prevention tips

Someone in the house has been diagnosed with the flu. This places others in the household, especially close contacts (those within six feet of the sick person), at risk for developing an influenza infection as well. While providing basic care, home caregivers of a person with the flu can protect themselves and others from unnecessary exposure to the influenza virus, may benefit from anti-viral prophylactic treatment, and can use sanitary practices that may lessen the spread of flu germs.

Are People in the Household High Risk for Flu Complications?

People who are high risk for complications of the flu should contact their healthcare provider regarding whether or not to obtain anti-viral treatment if they are in close contact with someone diagnosed with the flu.

High risk groups for serious complications from the flu include, but are not limited to, those who are:
  • 65 years old and older
  • Pregnant or are within two weeks of an ended pregnancy
  • Diagnosed with a chronic illness such as diabetes, asthma, heart disease
  • Young children, especially younger than two but children up to age four may be higher risk than older children
  • Receiving treatments that decrease immunity, such as certain cancer treatments

If possible, people who are at high risk for complications from the flu should avoid exposure to people who have flu-like symptoms. If the primary caregiver in the home is in a high-risk category, ideally another caregiver should be designated to care for the person with flu symptoms. If another caregiver is not an option, try to limit exposure as much as possible.

Many people who are in high-risk categories are encouraged to get the flu shot, and people in their household may also be encouraged to get the influenza vaccine whether or not the high-risk person is eligible for the shot, but the vaccine will not help someone who has already developed flu-like symptoms. People who get the seasonal influenza shot and/or the H1N1 (swine) flu shot can still get the flu.

How to Help Prevent the Spread of Flu in the Home

Below are some ways to protect others in the household if someone has the flu, if possible:
Tips for seeking the advice of a healthcare professional include:
  • Others in the home may contact their healthcare provider or a flu hotline to see if they should obtain a prescription for anti-viral medications, whether or not they are in a high risk category for flu complications.
  • If others in the home begin to have flu-like symptoms, they should contact a healthcare provider or flu hotline.

Tips for limiting exposure to the flu virus include:
  • Avoid close contact with the sick person by having that person stay in a separate room with a separate bathroom, if possible.
  • Encourage visitors to call rather than to visit in person.
  • Have the ill person or others in the same room wear face masks.
  • Designate one person, preferably someone that is not high risk for complications, to care for the sick person.
  • Avoid having a sick person to care for those who are high risk for complications of the flu, such as infants or elderly members of the household.
  • Have all persons in the household cover their coughs or sneezes with their inner arm. People who are carrying small children who are coughing and/or sneezing may protect themselves by carrying the child with his chin on the caregiver’s shoulder.

Cleaning tips in the home when someone has the flu include:
  • Wash hands appropriately and frequently. For more information on handwashing, see the article entitled Washing Hands Saves Lives.
  • Consider using paper towels rather than cloth towels during the infectious phase.
  • Ensure that all disposable items, such as tissues, used by the infected person are put in the trash after use.
  • Keep surfaces and other items in the home as clean as possible by disinfecting them per manufacturer’s recommendations.
  • Common eating utensils should be washed before another person uses them.
  • Dirty linens should be handled carefully and washed with laundry detergent and dried on a hot setting. Readers may wish to read How to Make a Bed With Someone in It.

Protecting Others When Someone Has the Flu at Home


When someone in a household is diagnosed with the flu, others are at risk for developing influenza as well. Other contacts within the home, especially those at risk for serious complications of the flu, can use these guidelines to help protect themselves and others from getting the flu as well. No preventive measures will guarantee that others will not get the flu, but these guidelines may help lessen the flu symptoms of close contacts if they do get the viral infection as well.

Although the source listed below is geared toward H1N1 or swine flu, many of the suggestions above can help if someone in the household has seasonal flu as well.

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