From the 25 January posting at Eye on FDA
Patients are changing. They are accessing medical information differently, they are storing it differently and they are consuming it more voraciously. This access to medical information and tools means that many patients are more medically conversant and knowledgeable than the patient of just five years ago. Medical literacy is likely on the rise.
It also changes the way physician and patient communicate. Five years ago, I never would have considered the need for email between my physician and myself, thinking it impractical. Today, I think a physician needs to have some portal of access for the exchange of data and information. Here are my readings – blood pressure, blood sugar, whatever… – for the week. The medical record will reflect information not just gathered at an exam in the office, but that gathered by my apps when I am not in the office. And when I’m diagnosed with a new condition, I fully expect either the physician or someone in his or her office to not only prescribe some medication, but to pull out an i-Pad to steer me to some good resources, including apps. If the condition is one where there are few treatment options and I’m expected to consider a clinical trial, the i-Pad should have a clinical trials app that lets us look at what’s available together….
- eHealth: patients are changing, but not (yet) the Physicians (scienceintelligence.wordpress.com)
- From Pinterest and Septris to the Patient of the Future (Science Blog)
“Are ePatients self diagnosing too much ? Too many people are not going to see their doctors on a regular basis and they need to be educated on why that is a bad idea. No printed or interactive forum can replace a trained medical professional. The Patient of the Future Like many “self-quanters,” Smarr wears a Fitbit to count his every step, a Zeo to track his sleep patterns, and a Polar WearLink that lets him regulate his maximum heart rate during exercise. Stanford University’s Septris app …”
…..When it came to medical decisions, almost all the respondents wanted their doctors to offer choices and consider their opinions. But a majority of patients — two out of three — also preferred that their doctors make the final decisions regarding their medical care.
“The data says decisively that most patients don’t want to make these decisions on their own” said Dr. Farr A. Curlin, an associate professor of medicine at the University of Chicago and one of the authors of the study.
The challenges appear to arise not when the medical choices are obvious, but when the best option for a patient is uncertain. In these situations, when doctors pass the burden of decision-making to a patient or family, it can exacerbate an already stressful situation. “If a physician with all of his or her clinical experience is feeling that much uncertainty,” Dr. Curlin said, “imagine what kind of serious anxiety and confusion the patient and family may be feeling.”
Patients and their families also often don’t realize that their doctors may be grappling with their own set of worries. …
- Talking about faith increases hospital patients’ overall satisfaction (esciencenews.com)
- Do Patients Have the Toughest Job in Medicine? (well.blogs.nytimes.com)
- What this doctor learned when he was a patient (kevinmd.com)
- Why doctors should stop wearing ties (kevinmd.com)
- Patients want and need to take a greater role in their medical care (kevinmd.com)
Why Physicians Are Reluctant to Share Patient Data: Fine Line Between Protecting Privacy and Public Health
Family doctors are reluctant to disclose identifiable patient information, even in the context of an influenza pandemic, mostly in an effort to protect patient privacy. A recently published study by Dr. Khaled El Emam the Canada Research Chair in Electronic Health Information at the University of Ottawa and the Children’s Hospital of Eastern Ontario Research Institute recently found that during the peak of the H1N1 pandemic in 2009, there was still reluctance to report detailed patient information for public health purposes.
These results are important today, so we can learn from that experience and prepare for the inevitable next pandemic.
“There is a perceived tradeoff between the public good and individual privacy. If we sway too much on the public good side, then all people’s health data would be made available without conditions,” explained Dr. El Emam. “If we sway too much on the individual privacy side then no health data would be shared without consent, but then this would potentially increase public health risks. Physicians are important gatekeepers of patient information, so we need to better understand the conditions under which they are willing to provide patient data so that everyone wins; we do not need to make these tradeoffs….
e-patient Dave de Bronkart was successfully treated for kidney cancer at a very late stage. He credits his recovery to using the Internet to find trusted medical information as well as to get advice from patients via support groups.
His video Let Patients Help outlines how and why patients should empower themselves.
Some video highlights
- Patients are presently the most underutilized part of the health team
- The e-patient movement is at least partly based on hippie ideals of self-reliance and self-care (think Whole Earth Catalog)
- e-patients are empowered, engaged, equipped and enabled through finding information to use in discussions regarding treatment options with their health care providers
- Support groups often are useful in providing information not available at other sites (as which doctors specialize in certain treatments)
- Patients not only need quality information, but also access to their raw medical data
How to evaluate medical and health information
- Evaluating Internet health information (Penn State)
- Evaluating Medical Research Findings and Clinical Trials (Family Caregiver Alliance)
- A Consumer’s Guide to Taking Charge of Health Information (Harvard Center for Risk Alliance)
- Evaluating Health Information on the Internet (National Cancer Institute)
- Quackwatch: Your Guide to Quackery, Health Fraud, and Intelligent Decisions (Stephen Barrett, M.D.)
Great starting places for quality health and medical information
- MedlinePlus (US National Library of Medicine/National Institutes of Health)
Links to information on over 700 diseases/conditions, drugs & supplements, videos & tools (as health calculators, anatomy videos, directories (as Find an Eye Doctor), and links to organizations
- UpToDate For Patients
Click on the Patient Information tab to find free information written for patients. These topics help one to learn more about a medical condition, better understand management and treatment options, and have a better dialogue with health care providers. This free information is adapted from the subscription based service UpToDate (which is for and by physicians and researchers).
- US Centers for Disease Control and Prevention (CDC)
Includes Health Topics A to Z, and sections as Diseases and Conditions as Healthy Living
- eMedicine Consumer Health
Comprehensive continuously updated health and medical information written by physicians. Information on specific diseases/conditions includes overviews, causes, diagnosis, treatments, outlook, and additional links. Slideshows, images, pictures,medications, and quizzes.
emedicine.com is geared towards health professionals. However it is free to all who register.
- But Wait, There’s More!
- Online consumer health guides, as Consumer Health (University of Toledo), Consumer Health (University of Florida), Consumer Health Guide (University of California)
Libguides are written by librarians on every subject imaginable. They are free to all.
- Never underestimate the finding power of a librarian.
Many academic and medical institutions offer at least some reference services to the general public. Be sure to ask for a reference librarian. He or she not only has a master’s degree in Library Science, but often additional related education in health related areas.
Online Health Communities/Support Groups
- Self-Help Group SourceBook Online
A starting point for finding every type of national, international, model and online self-help support group that is available starting point for finding every type of national, international, model and online self-help support group that is available. (MentalHelp.net)
Search with a phrase as “support groups” cancer or select a Health topic and select an organization.
- Medpedia communities
This site allows people with common health interests to share information and communicate. Anyone may create a community of interest and anyone may join.Medpedia is an open platform connecting people and information to advance medicine. Users include health care professionals, health care organizations, expert lay persons, students, and scientists.
- MedHelp International
This online health community which not only provides health information but helps patients actively manage their health through online personal health records andMedhelp trackers (iphone friendly options).
The People option allows one to search by a disease or condition to find related information (including symptoms, treatments, resources). One can also view postings and blogs by other members and interact with them.
Medical experts helps users by answering questions in Ask-an-Expert forums, participating in conversations with members in free live health chats, and sharing their knowledge and the latest news in blogs
- Mayo Clinic Online Community is ” free and is open to anyone, whether you have been a patient at Mayo Clinic or not. It includes content from various Mayo Clinic blogs,health and medical videos from Mayo’s YouTube channel and links to news articlesabout Mayo Clinic research and treatment advances. It also features a discussion forum where members can connect with others who have similar interests or concerns.”
A few related postings from my blog
- [How to] Explore Your Treatment Options
- Free Online Anatomy Sites
- How to obtain free/low cost articles from medical journals
- Plain language summaries Web sites explain medical studies for all
…Listening, saying sorry, and validating the complaint by repeating the complaint word for word – or least paraphrasing – can solve the majority of the problems and diminish the need for fights. Sometimes people just want to be heard…hear their complaints and gripes about life validated. Doesn’t mean necessarily you’re wrong and they’re right….they just need to blow off steam. Also, for some people after hearing their complaint repeated back it makes them realize they’re making a mountain out of a mole hill….they’re being unfair, unreasonable, and even silly. ….
..Source: Sorry Works! (“advocacy organization for disclosure, apology (when appropriate), and upfront compensation (when necessary) after adverse medical events.”)
- 10 steps to a successful complaint (telegraph.co.uk)
ScienceDaily (Mar. 25, 2011) — Approximately five percent of prescriptions submitted by CVS Caremark Pharmacy Benefit Management (PBM) members in a 30-day period during 2009 included a “dispense as written” (DAW) designation. This practice — whereby doctors or patients demand the dispensing of a specific brand-name drug and not a generic alternative — costs the health care system up to $7.7 billion annually, according to a new study by researchers at Harvard University, Brigham and Women’s Hospital and CVS Caremark. Moreover, these requests reduce the likelihood that patients actually fill new prescriptions for essential chronic conditions.
In a study published this week in the American Journal of Medicine,*** the researchers demonstrate that DAW designations for prescriptions have important implications for medication adherence. They found that when starting new essential therapy, chronically ill patients with DAW prescriptions were 50 to 60 percent less likely to actually fill the more expensive brand name prescriptions than generics. “Although dispense as written requests would seem to reflect a conscious decision by patients or their physicians to use a specific agent, the increased cost sharing that results for the patient may decrease the likelihood that patients actually fill their prescriptions,” the researchers said……
Whether it’s a car repair that didn’t fix the problem or a bad meal in a restaurant, many of us don’t hesitate to complain. Making our voices heard when something isn’t right is the first step in getting it corrected. But when we’re sick or need health care services, it’s hard to know where to direct a complaint. And it can be difficult to question people who may know more than we do, especially when we aren’t feeling well.
These reasons are valid, but they shouldn’t be obstacles. As a physician, I’m encouraged that consumers are becoming more comfortable asking their medical team questions. I hope this continues.
Hospitals and health groups have tried to make it easier for patients to raise concerns or complaints. But it’s still not easy to do. Health services are delivered in many different settings and are often not coordinated from one place to the next. So it’s up to the patient or his or her family to identify where to make a complaint and to follow through and report the problem.
A very helpful Government resource, called the Beneficiary Ombudsman, is available for people covered by Medicare or Medicare health plans. This Web site can serve as your first stop to learn how these and other Government programs work and how to file a complaint or an appeal.
People who are covered by private insurance should review the information they get when they enroll to find out who to contact when they have complaints.
Here are some resources for complaints or concerns that arise:
While you are in the hospital: If possible, first bring your complaints to your doctor and nurses. Be as specific as you can and ask how your complaint can be resolved. You can also ask to speak to a hospital social worker who can help solve problems and identify resources. Social workers also organize services and paperwork when patients leave the hospital.
If you are covered by Medicare, you can file a complaint about your care with your State’s Quality Improvement Organization (QIO). These groups act on behalf of Medicare to address complaints about care provided to people covered by Medicare.
Typical complaints QIOs handle are getting the wrong medication, having the wrong surgery, or receiving inadequate treatment. You can also find your QIO by calling 1-800-MEDICARE.
If you get an infection while you are in the hospital or have problems getting the right medication, you can file a complaint with the Joint Commission. This group certifies many U.S. hospitals’ safety and security practices and looks into complaints about patients’ rights. It does not oversee medical care or how the hospital may bill you.
To find out what other patients had to say about their recent hospital stays, visit the Hospital Compare Web site. You’ll find answers from patients about how well doctors and nurses communicated, how well patients’ pain was controlled, and how patients rated their hospital.
If you are discharged before you’re ready: This is a big concern for many patients because insurers balk at long hospital stays. Talk to the hospital discharge planner (often a social worker) if you don’t think you’re medically ready to leave the hospital. The discharge planner will take your concerns to the doctor who makes this decision.
If you are covered by Medicare or by a Medicare managed care plan, you can file an appeal about a discharge while you are still in the hospital. You should get a form from the hospital titled “An Important Message from Medicare,” which explains how to appeal a hospital discharge decision. Appeals are free and generally resolved in 2 to 3 days. The hospital cannot discharge you until the appeal is completed.
When you get your hospital bill: First, ask your doctor or the hospital’s billing department to explain the charges. Find out how the hospital handles complaints about bills, and make your case. If you still have questions, you should contact the Medicare carrier that handles billing issues for your Medicare program.
You can also call 1-800-MEDICARE about billing questions. Make sure you have the date of service, total charge in question, and the name of your doctor and hospital.
Even with this information, it’s not easy to be as assertive in a health care setting as it is in an auto repair shop or restaurant. But it’s a smart move that can help you get the quality care that you deserve.
I’m Dr. Carolyn Clancy and that’s my advice on how to navigate the health care system.
Agency for Healthcare Research and Quality
Questions Are the Answer: Get More Involved With Your Health Care
American Health Quality Association
Quality Improvement Organization (QIO) Locator
The Joint Commission
Report a Complaint about a Health Care Organization
Department of Health and Human Services
Beneficiary Ombudsman: Inquiries and Complaints
Department of Health and Human Services
Hospital Compare—A Quality Tool Provided by Medicare
Department of Health and Human Services
Medicare Appeals and Grievances
Department of Health and Human Services
Current as of March 2009
Communication in Cancer Care is a PDQ (Physician Data Query) summary** which outlines good communication skills among patients, family members, and health care providers. Good communication in all phases of cancer care contributes to the well being of the patient and improves quality of life.
The patient version addresses issues as the roles of family givers and parents, how to talk with the health care team (including the importance of checklists and record keeping)
and where to find more information on communicating effectively in cancer care settings.
The health professional version outlines factors and outcomes related to communicating effectively, how to communicate effectively in cancer care settings, and information on training programs and clinical trials.
On a related note, this is an example of why good communication is important in cancer care…
The Perils of Taking Experimental Cancer Drugs [Reuters Health, Oct 26,2010, by Frederik Joelving]
NEW YORK (Reuters Health) – Trying a new, experimental cancer drug may offer a glimpse of hope for very sick patients, but often does more harm than good, a new study shows.
Researchers said cancer doctors regularly resort to drugs still undergoing testing, as long as they have been approved for other diseases or in different combinations or doses.
But because the science is still up in the air, nobody really knows what the consequences of taking such drugs are.
“Many of these drugs end up not being the tremendous improvement that we hoped they would be,” said Dr. Otis Brawley, chief medical officer of the American Cancer Society, who was not involved in the new study.
“People need to realize that because the trials have not been completed there is a great deal that is not known about the treatments,” he told Reuters Health. “There are people who get these treatments and get hurt.”
The new study, published in the Journal of Clinical Oncology, looked at 172 clinical trials published over two years. [Editor Flahiff's note : Ask a reference librarian at a local public, academic, or medical library for availability and if any fee is involved]
Less than a third of the clinical trials showed the experimental drugs improved patient survival, and less than half found the drugs helped other clinical outcomes…..
Sometimes, of course, new drugs do work, and no one argues that doctors shouldn’t be allowed to prescribe medications they think will help patients.
But doctors should be very clear about the high risks involved. One way to do that, said Peppercorn, would be to require that cancer doctors get informed consent from patients before they start them on experimental drugs.
In the end, Brawley said, the decision to use such treatment should be left to the patient and his or her doctor.
“There are times when it can be justified,” he noted, “but it is done far more often than it should be.”
**PDQ is an online database developed and maintained by the National Cancer Institute. Designed to make the most current, credible, and accurate cancer information available to health professionals and the public, PDQ contains peer-reviewed summaries on cancer treatment, screening, prevention, genetics, complementary and alternative medicine, and supportive care; a registry of cancer clinical trials from around the world; and directories of physicians, professionals who provide genetics services, and organizations that provide cancer care. Most of this information, and more specific information about PDQ, can be found on the NCI’s Web site athttp://www.cancer.gov/cancertopics/pdq. Also called Physician Data Query.
Health care is complicated. For example it is not always easy to understand how to take a medication or get the best affordable health insurance. Health literacy is about understanding written instructions or information. It is also much more than that. It is getting the best information, understanding it, and being able to act on it.
If one does not understand any part of the health care system, it can harm your health. For example, if you do not know how to take your medicine correctly, you may not get well. If you do not know how to get good health insurance, you may put off getting the help you need.
The federal government is working with other health professionals to make health information more understandable.
You can increase your health literacy by following these steps
**Ask questions. Then, make sure you get and understand the answers. If you don’t understand, ask the doctor or nurse for more information. Asking questions may not always be easy, but it can get you the information you need to take better care of yourself. To help you, my agency developed a list of questions you can bring to the doctor, the pharmacist, or the hospital.
**Repeat information back to your doctor or nurse. After your doctor or nurse gives you directions, repeat those instructions in your own words. Simply say, “Let me see if I understand this…” This gives you a chance to clarify information. Studies show that doctors and patients often have very different ideas of what the patient is going to do after leaving the doctor’s office. For example, if a clinician advises you to ‘take two’ Coumadin, it is really important to know if they mean 2 milligrams—or two pills. Repeating back can help avoid potentially serious mistakes.
**Bring all your medicines to your next doctor’s visit. Ask your doctor to go over all of your drugs and supplements, including vitamins and herbal medicines. More than one third of adults struggle to understand how to take their medicines. Reviewing your medicines can help you and your doctor. You may even discover some mistakes, such as two drugs that shouldn’t be taken together.
**Have another adult with you. This might be especially true when you expect to receive important information.
Let the doctor’s office know you need an interpreter if you don’t speak or understand English very well. You have a right to an interpreter, at no cost to you. Even if you speak some English, tell the doctor’s office what language you prefer when you make an appointment.
**Make a Pill Card. My agency has published step-by-step instructions to create an easy-to-use Pill Card to help patients, parents, and others keep track of medicines.
A health advocate is a family member, friend, trusted coworker, or a hired professional who can ask questions, write down information, and speak up for you so you can better understand your illness and get the care and resources you need.
Research shows that quality health care means taking an active role in decisions about your care. If you’re facing a difficult medical decision, it’s a good idea to bring someone with you who can help you take an active role in your care when you’re not fully up to it.
As a doctor and a patient, I’ve seen how valuable it is to have “another set of ears and eyes” in the exam room. Having an advocate at medical appointments or during a hospital stay can ensure that you get the information you need to manage your health.
Source: Agency for Healthcare Research and Quality
Related MedlinePlus Page: Talking With Your Doctor
- How Health-Care Advocates Can Help (online.wsj.com)
- How patients can handle bad medical news (kevinmd.com, May 2011)
(Advice includes 5 steps, from writing down questions, to taking along a person to take notes for you)
Doctor-Patient E-Mails Are a Healthy Addition, Research Shows
Wed, 07 Jul 2010 15:00:00 -0500
California study finds patients with better care and outcomes after the online exchanges
California study finds patients with better care and outcomes after the online exchanges.
“According to prior studies, patients most often emailed to report some kind of change in their condition, to talk about lab results and to discuss medication issues.
Patients also tended to respect the doctor’s time, with three-quarters sending messages on actual medical issues as opposed to “their mother’s favorite meatloaf recipe,” said Terhilda Garrido, vice president for health information technology transformation and analytics at Kaiser Permanente and senior author of the study.”
The news item may be found at Doctor-Patient E-Mails Are a Healthy Addition, Research Shows