amednews: Why patients are turning less to media and friends for health information :: Dec. 26, 2011 … American Medical News
Excerpts from the 26 December 2011 news item of the American Medical Association (AMA)
Consumers’ access to physicians and the quality of information available are affecting their level of interest in seeking outside guidance on their conditions.
By PAMELA LEWIS DOLAN, amednews staff. Posted Dec. 26, 2011.
As patient visits to physicians have declined, so has their interest in finding information relating to their health.
The waning interest in information-seeking as patient visits fall is what the Center for Studying Health System Change called a “surprising” conclusion to a survey of 17,000 patients released in November. Visits to physicians dropped 4% between 2007 and 2010. Meanwhile, the percentage of American adults seeking information about a personal health concern in the previous 12 months decreased from 55.5% to 50% in the same period, it said.
Analysts said there probably are multiple reasons for that. The trend could reflect that when patients are less able to see a physician, they are less likely to be engaged in their health. It could be that with physician visits down, patients have more time to spend with their doctor, meaning they have less of a need for outside sources of information.
And they said the decline could reflect that so much information is available — and so much of it conflicting — that some overwhelmed patients may be opting out altogether from researching their health.
For physicians, analysts said, the implication of the study is that when patients come into their offices, they are going to rely on them more than ever for help in managing their health.1 in 5 patients has delayed or canceled a doctor visit, medical test or procedure in the past year.
The sources of information the center studied were the Internet, print media, television and radio, and friends and relatives. Internet was the only source that went up, to 32.6% from 31.1%. But center researcher Ha T. Tu wrote that the growth failed to keep pace with a strong rise in residential broadband Internet access, which went up from 47% to 66% between 2007 and 2010….
- How much guidance do patients want with their medical decisions? (jflahiff.wordpress.com)
- Epatients: The hackers of the healthcare world [O'Reilly Radar] (jflahiff.wordpress.com)
Project will give doctors the genetic information they need to choose drugs that work best and minimise side effects
Doctors have drawn up plans to sequence the full genetic code of thousands of people in a landmark project to personalise their medical care.
Volunteers will have all six billion letters of their genome read, stored and linked to their medical records to help doctors prescribe more effective drugs and other therapies.
The prestigious Mayo Clinic in the US will launch the pilot study early next year as part of an ambitious move towards an era of “proactive genomics” that puts modern genetics at the centre of patient care.
The trial reflects a growing trend in medicine to use genetic information to identify those patients who will benefit most from a drug and those who will respond better to an alternative.
Other medical centres around the world that are thinking of introducing their own whole genome tests will be watching the trial with interest.
The wealth of information locked up in the human genome can help doctors advise patients on lifestyle changes to stave off diseases they are at risk of developing, but in many cases that advice is familiar and generic – for example focusing on healthy eating, regular exercise, drinking in moderation and not smoking.
The Mayo Clinic trial goes further by giving doctors all the genetic information they need to choose drugs that will work best for a particular patient while minimising side effects.
- Gene sequencing to give medicine personal touch (smh.com.au)
- Gene sequencing to give medicine personal touch (theage.com.au)
- Mayo Clinic to sequence genome for thousands in personalized medicine embrace (fiercebiotechresearch.com)
- Mayo Clinic plans to sequence patients’ genomes to personalise care (guardian.co.uk)
[While I have some major concerns about this video, since it was at the blog item, I decided to add it anyway.
In my humble opinion the background music is too gloomy, the use of some declatatory statements seem to false imply "all", and it seems to foster an "us" versus "them" mentality that in the long term may be unhelpful...
Still, it does emphasize that people can be empowered through reputable information and interacting with other like-minded and similarly educated folks]
A quick reference for becoming an empowered patient
Excerpts from the blog item by Fred Trotter at O’Reilly Radar- Insights, Analysis, and Research about Emerging Technologies
help build open source software tools that patients can use to have greater control and influence over their own healthcare (like the Direct Project and Your Doctors Advice). As as result, I’ve become quite familiar with other tools that do the same sorts of things. There is a community of patients who are deeply interested in the ways in which they can become more engaged and how they can specifically use technology to achieve this. This community calls themselves epatients. The epatient community asked me to write a short collection of resources for “becoming an epatient.”
The “e” in epatient is intentionally obscure. The initial assumption is that the “e” stands for “electronic,” as it does in “email.” But in fact, the “e” stands for “engaged” or “empowered.” Nonetheless, reference to email is intentional: The epatient community recognizes that leveraging data is a critical part of empowering a person who happens to be sick. Patients must be “electronic” to become fully “engaged.” I think of epatients as the healthcare equivalent of makers and hackers. More importantly, they are the people I have in mind when I write software….
Let’s go over some simple concepts that the rest of my epatient advice and resources are based on:
- Your doctors are probably not managing your healthcare information. You should assume it is your responsibility. Otherwise, the people involved in your treatment process will often presume that this information simply does not exist.
- Other patients, with similar conditions to yours, can have better information about your health problem than your doctors have.
- Like the highway system, the healthcare system is generally beneficial, but there are dangers, and you need to learn to avoid them.
And here are two things you should keep in mind:
- Whenever I say “patient,” I actually mean “the patient/caregiver team.” Often, the patient will not have the energy to do what is necessary to be fully engaged. It is critical that when the patient cannot be an epatient, that at least the patient’s team be an epatient proxy.
- In regard to the “better information” I mentioned above, I don’t mean that your doctor is typically wrong and another patient is typically right about your diagnosis or treatment options. While that does happen on occasion, it is not the norm. Another patient’s information is “better” because your doctor typically does not have the visceral experience of being a patient. Your doctor doesn’t understand which lotion can make all of the difference or what position might let you get some sleep after a rough procedure. There is simply no substitute for experience. Sometimes that experience can make your life a little easier, and sometimes it can help you get the right treatments that literally will save your life. (This is the gist of epatient Dave deBronkart’s story.)
Read the entire blog item (including descriptions and links to epatient communities)
- The slow integration of community into health care (The Health Care Blog)
For a long time now patients have been meeting in online (and offline) communities, sharing experience, advice and more recently data and measurements. And the health care system–which knows that communities improve health–has done virtually nothing–other than some doctors having doctors answer questions on MedHelp. That is just starting to change. Last year Geisinger did a small trial with dLife that showed improvement in diabetics outcomes. More recently Aetna inked partnerships withMindBloom and OneRecovery, two communities focused on spirituality and addiction, and today Diabetic Connect (part of Alliance Health) announced a deeper integration with the Joslin Diabetes Center. It’s been a while, but the heart of Health 2.0 (communities) are starting to move towards the mainstream.
- Are you an ePatient? (enbloommedia.com)
- The Rise of the e-Patient: Slideshow (ScienceRoll)
“It’s always good to see the trends about the growing number and importance of e-patients. Lee Rainie, director of the Pew Internet Project, presented this wonderful overview of the Project’s health findings at Providence St. Joseph Medical Center in Burbank, CA, on January 12.”
- Why patients are turning less to media and friends for health information (jflahiff.wordpress.com)
- Can differential diagnosis be crowdsourced to Facebook Friends?(medgadget)
- ePatient Connections: A Patient Checks In. (sixuntilme.com)
- From E-patient Hackers to Health Games on Mobiles (scienceroll.com)
- The end of social – O’Reilly Radar (queuniversidade2.wordpress.com)
- Meet e-patient Dave – a voice of patient engagement (and related resources) (jflahiff.wordpress.com)
- 2020 Vision: The ePatient Evolution Over the Next 10 Years (prweb.com)
- ePatients Come Together to Brainstorm and Share (brassandivory.org)
- 6 P’s Of Social Health (socialmediaclub.org)
- The Rise of the ePatient – presentation by Pew Internet Project (casesblog.blogspot.com)
From the 6 January 2012 US Food and Drug Administration (FDA)
Stem cell therapies offer the potential to treat diseases or conditions for which few treatments exist.
Stem cells, sometimes called the body’s “master cells,” are the precursor cells that develop into blood, brain, bones and all of your organs. Their promise in medical treatments is that they have the potential to repair, restore, replace and regenerate cells that could then be used to treat many medical conditions and diseases.
But the Food and Drug Administration (FDA) is concerned that the hope that patients have for cures not yet available may leave them vulnerable to unscrupulous providers of stem cell treatments that are illegal and potentially harmful.
FDA cautions consumers to make sure that any stem cell treatment they are considering has been approved by FDA or is being studied under a clinical investigation that has been submitted to and allowed to proceed by FDA.
FDA has approved only one stem cell product [Flahiff's emphasis], Hemacord, a cord blood-derived product manufactured by the New York Blood Center and used for specified indications in patients with disorders affecting the body’s blood-forming system.
Regulation of Stem Cells
FDA regulates stem cells in the U.S. to ensure that they are safe and effective for their intended use.
“Stem cells can come from many different sources and under the right conditions can give rise to many different cell types,” says Stephanie Simek, Ph.D., deputy director of FDA’s Office of Cellular, Tissue and Gene Therapies.
Stem cells that come from bone marrow or blood are routinely used in transplant procedures to treat patients with cancer and other disorders of the blood and immune system.
Umbilical cord blood is collected from a placenta with the birth mother’s consent. Cord blood cells are then isolated, processed, and frozen and stored in a cord blood bank for future use. Cord blood is regulated by FDA and cord blood banks must follow regulatory requirements.
But there are many other stem cell products, including other cord blood-derived products, that have been reviewed by FDA for use in investigational studies, says Simek. Investigational products undergo a thorough review process as the sponsor prepares to study the safety and effectiveness of the product in adequate and well-controlled human studies (clinical trials).
As part of this review, the sponsor must show how the product will be manufactured so that FDA can make certain that appropriate steps are being taken to help assure the product’s safety, purity and potency. FDA also requires that there be sufficient data generated from animal studies to aid in evaluating any potential risks associated with the use of these products.
Consumers need to be aware that at present–other than cord blood for certain specified indications–there are no approved stem cell products.
Advice for Consumers
- If you are considering stem cell treatment in the U.S., ask your physician if the necessary FDA approval has been obtained or if you will be part of an FDA-regulated clinical study. This also applies if the stem cells are your own. Even if the cells are yours, there are safety risks, including risks introduced when the cells are manipulated after removal.There is a potential safety risk when you put cells in an area where they are not performing the same biological function as they were when in their original location in the body,” says Simek. Cells in a different environment may multiply, form tumors, or may leave the site you put them in and migrate somewhere else.
- If you are considering having stem cell treatment in another country, learn all you can about regulations covering the products in that country. Exercise caution before undergoing treatment with a stem cell-based product in a country that—unlike the U.S.—may not require clinical studies designed to demonstrate that the product is safe and effective. FDA does not regulate stem cell treatments used in solely in countries other than the United States and typically has little information about foreign establishments or their stem cell products.
Thwarting a Stem Cell Scheme
In December, 2011, three men were arrested in the United States and charged with 15 counts of criminal activity related to manufacturing, selling and using stem cells without FDA sanction or approval.
According to the criminal indictment, one of the accused, a licensed midwife who operated a maternity care clinic in Texas, obtained umbilical cord blood from birth mothers, telling them it was for “research” purposes. Instead, the midwife sold the cord blood to a laboratory in Arizona which, in turn, sent the blood to a paid consultant at a university in South Carolina. The owner of the laboratory in Arizona was convicted in August 2011 of unlawfully introducing stem cells into interstate commerce. She faces up to 3 years in prison and a fine of up to $10,000.
The consultant, an assistant professor, used university facilities to manufacture stem cell products. He then sent the products back to the lab, which sold them to a man representing himself as a physician licensed in the U.S. The man then traveled to Mexico to perform unapproved stem cell procedures on people suffering from cancer, multiple sclerosis and other autoimmune diseases.
The three defendants allegedly received more than $1.5 million from patients seeking treatment for incurable diseases.
“Scammers like these offer false hope to people with incurable diseases in order to line their own pockets with money,” says Special Agent in Charge Patrick J. Holland of FDA’s Office of Criminal Investigations (OCI), Kansas City Field Office. “FDA will continue to aggressively pursue perpetrators who expose the American public to the dangers of unapproved stem cells and ensure that they are punished to the full extent of the law.”
FDA’s OCI worked the case with the Federal Bureau of Investigations and the Internal Revenue Service’s Criminal Investigations Division.
This article appears on FDA’s Consumer Updates page, which features the latest on all FDA-regulated products.
- Stem Cells (Medline Plus) has links to overviews, news items, specific conditions, research (including clinical trials and research news from reputable organizations), directories and organizations
- Stem Cell Information(US National Institutes for Health) includes links to
- FDA Warns About Stem Cell Claims – Information You Should Know (regcompliance.wordpress.com)
- Stem Cells: Worldwide Markets for Transplantation, Cord Blood Banking and Drug Development (prnewswire.com)
- American scientist arrested in stem-cell clinic sting (blogs.nature.com)
- FBI crackdown on unproven stem cell therapies (newscientist.com)
- FBI crackdown on unproven stem cell therapies (newscientist.com)
- 3 Arrested for Peddling Miracle Stem Cell Cure (foxnews.com)
- Stem Cell Fraud: A 60 Minutes investigation (cbsnews.com)
- Legislator says stem cells helped ” Times Record News (wingright.org)
- Flexible Adult Stem Cells, Right There In Your Eye (medicalnewstoday.com)
- What Is Autologous Stem Cell Transplantation? (everydayhealth.com)
- Video: Preview: Stem Cell Fraud (cbsnews.com)
- FDA Approves Cord Blood For Stem Cell Transplant (medicalnewstoday.com)
- The FDA, Politics and Journalistic Fraud: The Stem Cell Battle in America (erasetheneed.wordpress.com)
- Texas prepares to fight for stem cells (nature.com)