From the 14 October 2014 article
he foundation of evidence-based research has eroded and the trend must be reversed so patients and clinicians can make wise shared decisions about their health, say Dartmouth researchers in the journal Circulation: Cardiovascular Quality and Outcomes.
Drs. Glyn Elwyn and Elliott Fisher of The Dartmouth Institute for Health Policy & Clinical Practice are authors of the report in which they highlight five major problems set against a backdrop of “obvious corruption.” There is a dearth of transparent research and a low quality of evidence synthesis. The difficulty of obtaining research funding for comparative effectiveness studies is directly related to the prominence of industry-supported trials: “finance dictates the activity.”
The pharmaceutical industry has influenced medical research in its favor by selective reporting, targeted educational efforts, and incentivizing prescriber behavior that influences how medicine is practiced, the researchers say. The pharmaceutical industry has also spent billions of dollars in direct-to-consumer advertising and has created new disease labels, so-called disease-mongering, and by promoting the use of drugs to address spurious predictions.
Another problem with such studies is publication bias, where results of trials that fail to demonstrate an effect remain unpublished, but trials where the results are demonstrated are quickly published and promoted.
The authors offer possible solutions:
From the 25 October 2013 blog item by James Coyne, PhD at PLoS Blogs (Public Library of Medicine)
Is advertising a psychotherapy as “evidence supported,” any less vacuous than “Pepsi’s the one”? A lot of us would hope so, having campaigned for rigorous scientific evaluation of psychotherapies in randomized controlled trials (RCTs), just as is routinely done with drugs and medical devices in Evidence-based Medicine (EBM). We have also insisted on valid procedures for generating, integrating, and evaluating evidence and have exposed efforts that fall short. We have been fully expecting that some therapies would emerge as strongly supported by evidence, while others would be found less so, and some even harmful.
Some of us now despair about the value of this labeling or worry that the process of identifying therapies as evidence supported has been subverted into something very different than we envisioned. Disappointments and embarrassments in the branding of psychotherapies as evidence supported are mounting. A pair of what could be construed as embarrassments will be discussed in this blog.
Websites such as those at American Psychological Association Division 12 Clinical Psychology and SAMHSA’s National Registry of Evidence-based Programs and Practices offer labeling of specific psychotherapies as evidence supported. These websites are careful to indicate that a listing does not constitute an endorsement. For instance, the APA division 12 website declares
This website is for informational and educational purposes. It does not represent the official policy of Division 12 or the American Psychological Association, nor does it render individual professional advice or endorse any particular treatment.
Readers can be forgiven for thinking otherwise, particularly when such websites provide links to commercial sites that unabashedly promote the therapies with commercial products such as books, training videos, and workshops. There is lots of money to be made, and the appearance of an endorsement is coveted. Proponents of particular therapies are quick to send studies claiming positive findings to the committees deciding on listings with the intent of getting them acknowledged on these websites.
But now may be the time to begin some overdue reflection on how the label of evidence supported practice gets applied and whether there is something fundamentally wrong with the criteria.
Now you see it, now, you don’t: “Strong evidence” for the efficacy of acceptance and commitment therapy for psychosis
On September 3, 2012 the APA Division 12 website announced a rating of “strong evidence” for the efficacy of acceptance and commitment therapy for psychosis. I was quite skeptical. I posted links on Facebook and Twitter to a series of blog posts (1, 2, 3) in which I had previously debunked the study claiming to demonstrate that a few sessions of ACT significantly reduced rehospitalization of psychotic patients.
From the January 22/29 2014 issue
The phrase evidence-based medicine (EBM) was coined by Gordon Guyatt1 and then appeared in an article in The Rational Clinical Examination series in JAMA in 1992,2 but the roots of EBM go much further back. The personal stories of the origins of EBM were recently explored in a filmed oral history of some of the individuals most strongly associated with the birth of the movement (see Video, Evidence-Based Medicine: An Oral History).
JAMA and the BMJ invited 6 individuals (including us, with one of us as host, R.S.) who have played a prominent part in the development of EBM to participate in an oral history event and filming. Videos of this event and of interviews with 3 other EBM leaders (Box) have been woven together and may be accessed athttp://ebm.jamanetwork.com. Just 20 years after the term EBM began to be used, an early and informal history has emerged.
Evidence-based medicine grew out of critical appraisal. When Gordon Guyatt, currently a professor of epidemiology and biostatistics and medicine at McMaster University, took over as director of the internal medicine residency program at McMaster in 1990, he wanted to change the program so that physicians managed patients based not on what authorities told them to do but on what the evidence showed worked. He needed a name, and the first was “scientific medicine.” The faculty reacted against this name with rage, arguing that basic scientists did scientific medicine. The next name was “evidence-based medicine” (Evidence-Based Medicine: An Oral History Video).
In the Oral History Video, Sackett distinguishes EBM from critical appraisal because it combines research evidence with clinical skills and patient values and preferences.
[Oral history video here –> http://jama.jamanetwork.com/multimediaPlayer.aspx?mediaid=6391356]
Guyatt acknowledges that in the 1992 JAMA article there was little about patient values.2 It was over the next 5 years that patient values and preferences became much more central, and since then strongly emphasized (Evidence-Based Medicine: An Oral History Video).
Evidence-based medicine quickly became popular, Sackett believes, for 2 main reasons: it was supported by senior clinicians who were secure in their practice and happy to be challenged and it empowered young physicians—and subsequently nurses and other clinicians. Evidence-based medicine did, however, produce a backlash, particularly, says Sackett, “among middle-level guys who were used to making pronouncements,”
Related articles (varying viewpoints)
Negative studies are just as important to consumers as positive studies. They are essential blocks in the evidence base. They help everyone—consumers and health care providers—avoid interventions that don’t help.
A recent study in the New England Journal of Medicine, authored by six researchers at the National Heart, Lung, and Blood Institute (NHLBI), prompts some thoughts about studies with negative outcomes—and their importance in the entire research process.
In this report Dr. David Gordon, Dr. Michael Lauer, and their colleagues analyzed the 244 extramural, randomized clinical trials supported by NHLBI and completed between the years 2000 and 2011. The primary outcome was the time between completion of trials and publication of the main results in a peer-reviewed journal; the secondary outcome was the annual citation rates for these articles—i.e., how many times each article was cited in a given time period. The team also examined a number of trial characteristics that related to these questions, such as budget, number of participants, and whether the result was positive or negative.
Among the many interesting findings are that more than half of the studies analyzed (58 percent) yielded negative results. And intriguingly, of the 31 trials having the highest citation rates, only 8 (26 percent) had positive results. Studies supported by NHLBI, and indeed, studies supported by NCCAM, generally start with enthusiasm of the investigators, peer reviewers, and NIH. They generally start with the expectation (and indeed preliminary data) that the intervention being studied has the potential to improve patient outcomes. By and large, when no benefit is demonstrated, research teams are understandably disappointed. And Gordon and co-authors found that investigators completing negative studies are indeed significantly slower to publish.
Nevertheless, we do the research because we don’t know the answer! Negative studies are just as important to consumers as positive studies. They are essential blocks in the evidence base. They help everyone—consumers and health care providers—avoid interventions that don’t help.
There is an additional “silver lining.” Negative studies are extremely important in the research process. And the high-quality data produced during our well-performed, carefully monitored studies are of enormous value in deciding on follow-on questions and in the design of subsequent studies.
We learn from surprises—from discovering that we don’t always know what we think we know.
- The National Center for Complementary and Alternative Medicine incorporates negative study findings in
many of its products, including Herbs At A Glance
- Evidence based content for medical articles on Wikipedia? (scienceroll.com)
- What’s best care – now available to all (bangordailynews.com)
- Data driven Personalized Medicine Metamed when you cannot afford misdiagnosis (nextbigfuture.com)
- Anecdotes are never evidence…unless they’re your own. (skeptoid.com)
- Searching for Evidence Based Information (hslnews.wordpress.com)
- Costs of implementation of evidence-based therapies for stroke in Ireland (handtutorblog.wordpress.com)
Originally posted on ScienceRoll:
I would love to get your feedback on a project I just came across on Wikipedia, the WikiProject Medicine/Evidence based content for medical articles on Wikipedia. The organizer of the project is the same as in Cochrane Students’ Journal Club. Please sign up if you are interested in helping us out.
Wikipedia has been accepted world wide as a source of information by both lay people and experts. Its community driven approach has ensured that the information presented caters to a wide variety of people. An article from 2011 in the Journal of Medical Internet Research found that a significant number of experts and doctors consult Wikipedia’s medicine related topics.
Medical information is very dynamic and conclusions and recommendations are turned on their heads based on new findings. Taking this into account it is important to ensure that Evidence Based content is a part of any medicine related…
View original 26 more words
On average, new treatments perform better in clinical trials only slightly more often than existing treatments, according to a new systematic review published in The Cochrane Library. The fact that experimental treatments are not more effective may seem disappointing, but the authors of the review say their findings satisfy an important ethical requirement for clinical trials.
Randomised trials compare the effects of one treatment to another. In a randomised trial patients are randomly allocated to different treatment groups to ensure that like will be compared with like. When a new treatment is being tested, it is hoped or even expected that it will be better than the established treatment with which it is being compared. These expectations lead to an ethical dilemma. If the researchers already know that one treatment is better, they would be knowingly allocating some people to an inferior treatment. If randomised trials are to be ethical, therefore, only half of new treatments should turn out to be better than existing ones.
Cochrane Reviews are systematic reviews of primary research in human health care and health policy, and are internationally recognised as the highest standard in evidence-based health care. They investigate the effects of interventions for prevention, treatment and rehabilitation. They also assess the accuracy of a diagnostic test for a given condition in a specific patient group and setting. They are published online in The Cochrane Library.
- Browse Free Summaries Looking for the full text of these Cochrane Reviews? They may be available at your local public, academic, and medical libraries. Call ahead and ask for a reference librarian. Many academic and medical libraries do serve the public, providing at least some basic services.
ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.
- Clinical trials: Around half of new treatments perform better than existing treatments (medicalxpress.com)
- Cochrane Review finds no benefit from routine health checks (engineeringevil.com)
- Don’t call CAM “cost-effective” unless it’s actually effective (sciencebasedmedicine.org)
- Clinical Trials (cancerwhattodoorsay.wordpress.com)
- Clinical trials better than before (wlfi.com)
[Reblog from HealthNewsReviewBlog, 20 July 2012]
I’m off to the Rockies next week to speak at and participate in The Rocky Mountain Workshop on How to Practice Evidence-Based Health Care at the invitation of Dr. Andy Oxman of theNorwegian Knowledge Centre for the Health Services in Oslo.
This is the 14th annual workshop but this will be my first. I’ve always heard wonderful things about it from past participants – journalists, policymakers and public health professionals.
One of this year’s workshop themes will be screening tests – which any reader of this blog knows is a favorite topic of mine.
The organizers state:
The five-day workshop is an intense, hands-on learning experience that uses a small-group, problem-based approach to learning.
One of the small groups, supported by the NIH Office of Disease Prevention, will focus on using evidence to inform and improve reporting, policy decisions, public health decisions, clinical and personal decisions about screening.
Meantime, on the topic of screening, I finally read Alan Cassels’ book, “Seeking Sickness: Medical Screening and the Misguided Hunt for Disease.“ Alan published the Canadian equivalent of our HealthNewsReview.org project – the Canadian Media Doctor site. He’s let that project gather some dust while he works on other things like this book. I can’t quite seem to ever find time for my book idea because I’m so married to this site. Maybe he’s wiser. It seems impossible to do both.
- Screening and Testing (Agency for Healthcare Research and Quality)
- Early Disease Detection (eMedicine Health)
- Health Screening (MedlinePlus)
- Women: Monitor Your Health With These Screening Tests (health4uandpets.typepad.com)
- Are Physicians Smarter than Fifth Graders? (psychologytoday.com)
- HPV testing in HIV-positive women may help reduce frequent cervical cancer screening (eurekalert.org)
- Should we make surgeons get tested for HIV, hep B and hep C? (macleans.ca)
- The problem with skipping PSA screening tests – Fox News (drugstoresource.wordpress.com)
- New screening test to help people with hearing loss in China (pattidudek.typepad.com)
- Lecturer advocates obligatory health screening and test for university staff (ghananewsagency.org)
- Screening Tests: Which Ones Do I need? (wcvb.com)
After giving two examples of recent direct marketing advertising (to potential patients) for knee replacements he proceeds…
More than year ago I wrote about hip joint TV ads. At that time, Naomi Freundlich wrote:
Together, hip and knee replacement surgeries already represent the largest hospital expense for Medicare. And, according to an article in Time magazine, the money spent on these two procedures is expected to reach $65.2 billion by 2015.
There is no doubt that part of Medicare reform will involve looking at ways to reduce this cost. One approach is to move the choice of device away from vague “physician preference” and toward evidence-based criteria…
he American Joint Replacement Registry was created recently, and just this January began a pilot project collecting hip and knee replacement information from 16 representative hospitals. In a statement, the organization (made up of surgeons, executives from the device industry, payers and patient representatives) said that its “long-term goal is to capture data from 90 percent of U.S. hospitals where hip and knee arthroplasty procedures are performed, which amounts to between 5,000 and 6,000 different hospitals, in the next 5 years.”
In the end, marketing devices directly to consumers is antithetical to these other measures that are designed to promote evidence-based treatments. …
Unless insurers—both public and private—start using evidence-based decision making to set coverage for new hip implant devices, the number of younger patients undergoing more expensive procedures will likely rise—sometimes for the wrong reasons.
- What Surgeons Get Paid, and What Patients Think Surgeons Get Paid (freakonomics.com)
- Studies: Knee Replacements Double In Last Decade (boston.cbslocal.com)
- Prolific surgeon leads way as Fremont hospital rides wave in joint replacements (mercurynews.com)
- Knee Replacement | Knee Pain Treatment (earlsview.com)
And don’t miss the lively discussion at the end of the article..
Some things in medicine are obvious. Despite the endless worship of ‘evidence-based’ medicine, and the constant barrage of studies on every conceivable topic, we do certain things because we know they just seem right. I take as evidence the fact that we daily try to save lives, devoting research time, untold gazillions of dollars and heroic clinical effort to our continued goal of staving off death. Why is this? Do we know that death is inherently worse than life? Well, since we can’t see beyond the grave, and can’t exactly engage in double-blind, placebo controlled studies about the after-life, the answer is “no.” But we assume that life is preferable to death, based on our feelings, our sense of the thing.
The same is true in our personal lives. No one can show me a scientific study that details why he or she married a particular person. No one can offer up a mole of affection for empiric analysis. And yet, we don’t doubt the existence of romance, or the reality of love.
And yet, medicine is filled with situations in which “self-evident truth” is systematically ignored, and those who believe in it intentionally and often viciously marginalized.
For example, after years of being told that physicians weren’t giving enough treatment for pain, and after years of clinicians saying, “yes we are, and too many people are addicted and abusing the system,” the data from CDC says that far too many are dying from prescription narcotics, far too many infants being born addicted, and far too many people, young and old, are using analgesics and other drugs not prescribed for them. To which many of us say, “duh!”
And then there’s the customer service model, the thing which causes clinicians to lose their jobs as satisfaction scores fall due to disgruntled patients (often upset over not receiving the drug they desired … see above paragraph). This is a darling of administrators. And it clearly has flaws…
- Will Evidence-Based Medicine Become Reality? (georgevanantwerp.com)
- A Rough Guide to Evidence-Based Medicine (jdc325.wordpress.com)
- This is not what the doctor ordered (thehindu.com)
- “How do you feel about Evidence-Based Medicine?” (sciencebasedmedicine.org)
- Scientific evidence (sixpointnineme.wordpress.com)
- Evidence based medicine (slideshare.net)
- Faux Evidence-Based Behavioral Medicine at Its Worst (Part I) (psychologytoday.com)
- Healthcare, a New Car, or Paying for College (georgevanantwerp.com)
American Geriatrics Society Updated Beers Criteria for Potentially Inappropriate Medication Use in Older Adults
From the April 2012 Full Text Report summary (with link to report)
Potentially inappropriate medications (PIMs) continue to be prescribed and used as ﬁrst-line treatment for the most vulnerable of older adults, despite evidence of poor outcomes from the use of PIMs in older adults. PIMs now form an integral part of policy and practice and are incorporated into several quality measures. The speciﬁc aim of this project was to update the previous Beers Criteria using a comprehensive, systematic review and grading of the evidence on drug-related problems and adverse drug events (ADEs) in older adults. This was accomplished through the support of The American Geriatrics Society (AGS) and the work of an interdisciplinary panel of 11 experts in geriatric care and pharmacotherapy who applied a modi- ﬁed Delphi method to the systematic review and grading to reach consensus on the updated 2012 AGS Beers Criteria. Fifty-three medications or medication classes encompass the ﬁnal updated Criteria, which are divided into three categories: potentially inappropriate medications and classes to avoid in older adults, potentially inappropriate medications and classes to avoid in older adults with certain diseases and syndromes that the drugs listed can exacerbate, and ﬁnally medications to be used with caution in older adults. This update has much strength, including the use of an evidence-based approach using the Institute of Medicine standards and the development of a partnership to regularly update the Criteria. Thoughtful application of the Criteria will allow for (a) closer monitoring of drug use, (b) application of real-time e-prescribing and interventions to decrease ADEs in older adults, and (c) better patient outcomes.
- Dozens of common medications identified as risky for the elderly (foxnews.com)
- Blame it on the Medication (uw20sciencemediaandculture.wordpress.com)
- The New Old Age Blog: Fistfuls of Pills (newoldage.blogs.nytimes.com)
- New AGS Beers Criteria Updated for 2012! (jajsamos.wordpress.com)
The Guide to Community Preventive Services is a great resource for what methods and interventions work well to improve public health. It is geared towards public health officials, researchers, and policy makers. However, it is also a good aid for anyone looking for the best way(s) to address issues touching family members and friends. The information can be used to promote or advocate for changes in policies and laws at local or national levels. They can be used to positively influence changes for the better in schools, workplaces, public health departments, and more.
A good way to start is through the Topics link at the top of the page. It includes links to issues as asthma, cancer, diabetes, nutrition, obesity, vaccines, and violence. Each topic includes links to more information on the topic and related topics.
Many topics have summaries of recommendations and findings. For example the topic Diabetes includes recommendations for certain disease management programs but insufficient evidence for self management programs in school settings or worksites.
All information on the interventions for a specific topic (as violence, diabetes, alcoholism) is carefully reviewed through a standardized step by step process. systematic reviews. Each reviews includes summarized results of all related evidence. These unbiased evidence-based reviews are also called systematic reviews.
[Click here for a good explanation of the systematic review process]
Each topic in this community guide answer questions such as: c
- What interventions have and have not worked?
- In which populations and settings has the intervention worked or not worked?
- What might the intervention cost? What should I expect for my investment?
- Does the intervention lead to any other benefits or harms?
- What interventions need more research before we know if they work or not?
- Use the community guide for an overview, listing of topics, and subscribing to email updates
- Methods for explanations of systematic and economic reviews
- Resources as
- Behavioural interventions for the prevention of sexually transmitted infections in young people aged 13 – 19 years: a systematic review (testcas.wordpress.com)
- A systematic review of the interconnections between maternal & newborn health – collaboration with researchers at Aga Khan University (ismailimail.wordpress.com)
- Systematic review / synthesis of qualitative evidence – issues (phtwitjc.wordpress.com)
- Systematic review / synthesis of qualitative evidence – issues (healthpolsoc.wordpress.com)
- Systematic review of beliefs, behaviours and influencing factors associated with disclosure of a mental health problem in the workplace (jflahiff.wordpress.com)
- PubMed Health – A Growing Resource for Clinical Effectiveness Information (jflahiff.wordpress.com)
- Patients want to understand the medical literature (with links to resources for patients) (jflahiff.wordpress.com)
- Poorly presented risk statistics could misinform health decisions(jflahiff.wordpress.com)
- What is comparative effectiveness research? (jflahiff.wordpress.com)
- Cochrane Reviews – A Great Source for Sound Medical Evidence (jflahiff.wordpress.com)
From the 9 December press release (at Eureka News Alert)CRD announces new partnership with PubMed Health
PubMed Health is a new online service provided by the National Center for Biotechnology Information (NCBI) at the US National Library of Medicine (NLM) – the world’s largest medical library. The service provides summaries and full text of selected systematic reviews and also provides information for consumers and clinicians based on those reviews
Systematic reviews are widely recognised as reliable sources of information about the effects of healthcare interventions. But as with individual research studies, they can be hard to find, may have flaws and can be difficult to interpret.
Since 1994, CRD has been producing and maintaining DARE, a database which uniquely provides access to over 11,000 abstracts of quality assessed and critically appraised systematic reviews. The database has become a key resource for health professionals and policy makers as it provides its users with a ‘bottom line’ on the overall validity and reliability of each review.
The new partnership involves CRD providing DARE content to PubMed Health.
Deputy Director of CRD Dr Amanda Sowden said: “CRD aims to produce and disseminate high quality evidence to inform health care decision making in the UK and internationally. Our partnership with PubMed Health is an exciting and prestigious development that will help give our database content truly global reach.”
Update — PubMed Health December 2011 Release
With its December release, PubMed® Health grows to over 18,000 systematic reviews and health technology assessments in the last 10 years. With the inclusion of the Database of Reviews of Effects (DARE) from the Centre for Reviews and Dissemination in England, PubMed Health is getting close to comprehensive coverage of reliable systematic reviews on clinical effectiveness.
Other new features and content additions in this release include:
- Evidence-based, regularly updated information on cancer for consumers and health professionals from the National Cancer Institute (NCI®) Physician Data Query (PDQ®) database.
- Two full-text books under “Understanding research results” from the “Understand clinical effectiveness” tab:
- Irwig L, et al. Smart Health Choices: Making Sense of Health Advice. London: Hammersmith Press; 2008. Available from: http://www.ncbi.nlm.nih.gov/books/NBK63638/
- Evans I, et al. Testing Treatments: Better Research for Better Healthcare. 2nd edition. London: Pinter & Martin; 2011. Available from: http://www.ncbi.nlm.nih.gov/books/NBK66204/
- Simplified and broadened — display of medical encyclopedia search results.
Addition of Over 12,000 Reviews from DARE
A new section in the “Contents” drop-down box on the homepage has been added for the DARE reviews (see Figure 1). This new content type rounds out PubMed Health’s coverage of systematic reviews on clinical effectiveness in the published biomedical literature, joining over 4,500 Cochrane reviews and hundreds of systematic reviews by health technology assessment agencies.
Figure 1: Contents drop-down box.
DARE is a key database produced by the Centre for Reviews and Dissemination (CRD) and funded by England’s National Institute of Health Research. Information specialists at CRD regularly search an extensive group of electronic databases, supplemented by hand searching, to identify published systematic reviews that meet their set of scientific criteria.
For about half of the reviews that qualify for DARE, a CRD summary with critical appraisal of the scientific quality of the review is added. These may raise caveats about the reliability of the review, as in the example featured in Figure 2.
PubMed Health displays the title of the review and its citation (see #1 in Figure 2). For those reviews with a full CRD summary and appraisal, the conclusion is then displayed, followed by a link to the complete version (see #2 in Figure 2). This is followed by the abstract of the review itself, if one is included in PubMed (see #3 in Figure 2).
Figure 2: Example of a DARE review with CRD summary.
Each PubMed Health record from DARE includes a link to an explanation of CRD’s process and assessment criteria.
Currently, DARE is added to weekly, and new records and summaries will appear shortly afterward in PubMed®Health. The records will not yet appear in PubMed.
Changes to Display of Search Results
DARE reviews are returned with all results, and can also be viewed under their own content type (see #1 in Figure 3).
Medical encyclopedia content has been simplified, with some content text also appearing (see #2 in Figure 3). Previously, only medical encyclopedia content for diseases and drugs were shown on the search results page. Relevant medical encyclopedia content for procedures and other types of searches now display.
The parallel “Clinical Queries” filter search for systematic reviews in PubMed remains (see #3 in Figure 3). This search continues to return results chronologically.
Figure 3: Search results.
NCI cancer information for patients and health professionals appears under the “For consumers” and “Clinical Guides” links, respectively.
Twitter followers can learn more about PubMed Health content and additions by following @PubMedHealth.
By Hilda Bastian
National Center for Biotechnology and Information
Findings of a recent study by JISC:
Publishing a lay summary alongside every research article could be the answer to assisting in the wider understanding of health-related information.
Patients Participate! asked patients, the public, medical research charities and the research community, ‘How can we work together in making sense of scientific literature, to truly open up research findings for everyone who is interested?’ The answer came from patients who explained that they want easy-to-understand, evidence-based information relating to biomedical and health research.
Some universities now offer researchers training in communicating with lay audiences. (…)
JISC believes that publicly-funded research should be made available for everyone and be easy to find. JISC funded this work to show how making access to scientific literature enables citizen-patients to participate in the research process, therefore providing mutual understanding and better links between scientists, medic, patients and the general public.
“Summaries for Patients” and other plain language summaries help patients and others understand medical studies and guidelines
“Summaries for Patients” are brief, non-technical summaries of studies and clinical guidelines published inAnnals of Internal Medicine. The Summaries aim to explain these published articles to people who are not health care providers.
- Summaries about studies describe how researchers did the published study and what they found.
- Summaries about clinical guidelines describe the official recommendations for patient care developed by official groups such as the US Preventive Services Task Force or the American College of Physicians.
To search for summaries, click on New Search (top of middle column) at “Summaries for Patients”
Once at the New Search Page (http://www.annals.org/search), be sure to check Summaries for Patients , under Limit Results by Section (Articles Published After 1927)
Here are excerpts from a recent Summaries for Patients, Who Reports Having More Pain at the End of Life?
What is the problem and what is known about it so far?
Pain at the end of life is everyone’s great fear, but we still do not know enough about what makes pain worse at the end of life. Studies of pain near death have mostly looked at specific types of patients, such as those with cancer or those who are in a hospice program in which a patient’s comfort and reducing pain is a main focus of care. Other studies have asked family members about their deceased or dying relative’s experience of pain in the last months of life, but these reports are affected by their feelings about the pain of their loved one. In addition, studies have generally not examined patients from national surveys that offer broader understanding of patients’ experience of moderate to clinically significant pain at the end of life.
What did the researchers find?
Among the more than 4700 patients in the study, about 25% had clinically significant pain. However, the proportion experiencing significant pain increased to nearly 50% in the last 4 months before death. One of the most important things that affected the amount of pain was having arthritis. Surprisingly, the reason that a person was dying, such as heart disease or cancer, was not associated with important differences in the amount of pain.
What were the limitations of the study?
No information about treatment for pain was provided, and the study did not follow specific patients over time to see how their pain changed. Some people with arthritis might have had pain from something else that they mistakenly thought was arthritis.
What are the implications of the study?
Physicians and patients are not good at knowing when death is close, so it is important long before the last few months of life to discuss pain and ways to reduce it. Arthritis may be an important cause of pain or death that could be reduced by lifestyle changes long before death.
patientINFORM plain language summary Web sites are provided by participating publishers to help patients or their caregivers more fully understand the implications of research and to provide links to the full text of research articles they’ve selected from participating journals. The publishers allow readers following links from patientINFORM material on the health organizations’ sites to access the full text of these articles without a subscription, and they provide patients and caregivers with free or reduced-fee access to other articles in participating journals.
- American Cancer Society (News Center)
- American Association for the Advancement of Science (Eureka Alert- Medicine and Health)
- American Diabetes Association (Access: Diabetes Research)
- American Heart Association
- Lupus Foundation of America (Research Summaries)
- National Breast Cancer Coalition
- National Organization for Rare Disorders
- American Society of Hematology Articles for patients from the ASH education book can be accessed via the patient section of ASH’s web site under Other Resources.
- Journal of Rehabilitation Research and DevelopmentFor its nontechnical readers (e.g., veterans, patients, and caregivers), JRRD publishes plain-language summaries in each issue that describe the purpose and explain who may benefit from the research. These summaries are useful tools that keep patients and interested individuals informed of current research and encourage discussion of research between patients and their healthcare providers.
Cochrane Collaboration provides systematic reviews of the strongest evidence available about healthcare interventions (as drugs and medical procedures). It does not cover all interventions, but those covered were reviewed in-depth by experts in the medical and library fields.
The main activity of the Collaboration is the preparation of Cochrane reviews that are published electronically in successive issues of The Cochrane Library. These Cochrane reviews investigate the effects of interventions for prevention, treatment and rehabilitation. They also assess the accuracy of a diagnostic test for a given condition in a specific patient group and setting.
[Click here to find more information about the use of the evidence to inform decision making in health care ]
Here is how to find plain language and audio summaries of Cochrane reviews
- Go to the Cochrane Collaboration home page and scroll down to Browse Free Summaries.
Topics include Breast Cancer, Dementia and Cognitive Improvement, and Complementary Medicine.
- Click on To the Cochrane Library in the upper right corner of the Cochrance Collaboration home page.
This Cochrane Library search page has a Help page , and an Advanced Search option.
Related Blog Items
Cannot find a plain language summary with the above resources?
Consider asking a reference librarian for help at your local public, academic, or hospital library. Many academic and hospital libraries provide at least limited reference service to the public.
Call or email them for information about their services.
You may also contact me at jmflahiff@msncom. I will do my best to reply within 48 hours.
The art of medicine, the most important part of medicine, involves several components:
- Caring for patients, showing honest concern and compassion
- Giving patient’s time, not rushing in and out of the exam clinic room, being patient with them, having a great bedside manner
- Using the evidence based medicine algorithms as a guideline, as we apply them to each and every patient we see. Understanding that every patient is an individual who has individual circumstances that affect their lives
- Helping every patient to acquire the best outcome they can for themselves by working with them, educating them, coming up with a mutually agreed upon plan of action
Evidence based medicine does not teach us how to apply them to the patients we see, only the art of medicine does that. [Flahiff’s emphasis] Much unlike evidence based medicine we don’t learn the art of medicine in a classroom. We learn the art of medicine by seeing patients, one by one, year after year. As new research comes out and the evidence based medicine algorithms change, hopefully we have refined our art of medicine skills to such a fine point that we have attained the stature of a wise mentor….
- Evidence based medicine removes a physician’s autonomy (kevinmd.com)
- Compassionate care is a crucial component of care (kevinmd.com)
- Using Social Media For Practicing Evidence Based Medicine (drneel.wordpress.com)
- Substitutes for evidence based (and science based) medicine (doctorrw.blogspot.com)
- 5 tips to evaluate medical websites (kevinmd.com)
Don’t Cross Your Eyes…They’ll Get Stuck that Way!, a new book by myth-fighting Indiana University School of Medicine pediatricians Aaron Carroll, M.D., M.S., and Rachel Vreeman, M.D., M.S., debunks the pearls of medical wisdom that many people and even their physicians believe are true. Be prepared to revise your thinking; no, an apple a day won’t keep the doctor away and no, warm milk won’t help you sleep.
Dr. Carroll, associate professor of pediatrics, and Dr. Vreeman, assistant professor of pediatrics, are physicians and health services researchers on a mission to bring evidence-based medicine to the general public and slay the growing number of health myths that are so prevalent.
“You shouldn’t just accept that the toilet seat is the dirtiest place in the bathroom, or that the air on planes can make you sick, or that cell phones cause brain cancer. It’s OK to question your physician. Asking why is just as important as asking what,” said Dr. Vreeman.
Why do so many myths exist?
“People want to make sense of the world around them; if they read it in the paper or on the internet, or hear it on TV or from their mom or others in authority, they think it must be true. The difference between association and causation is being lost. Just because two things occur at nearly the same time or initially appear related, like vaccines and autism, for example, doesn’t mean that one caused the other,” said Dr. Carroll. …
..Don’t Cross Your Eyes…They’ll Get Stuck that Way! is published by St. Martin’s Press and is available online and at book stores across the country.
- Common drugs linked to cognitive impairment and possibly to increased risk of death, study suggests (sciencedaily.com)
- Waterlogged America: Do We Drink Too Much? (abcnews.go.com)