Patients want to understand the medical literature (with links to resources for patients)

http://medicalcenter.osu.edu/patientcare/library_for_health_information/Pages/index.aspx

From the Science Intelligence blog item

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.

http://www.jisc.ac.uk/news/stories/2011/10/participate.aspx

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“Summaries for Patients” and other plain language summaries help patients and others understand medical studies and guidelines

“Summaries for Patients

“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.

The Cochrane Collaboration

Working together to provide the best evidence for health care

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 

• How to read a research paper (and also understand medical/health news 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.

What Is Comparative Effectiveness Research?

What Is Comparative Effectiveness Research?

From the US AHRQ (Agency for Healthcare Research and Quality) Web page

Comparative effectiveness research is designed to inform health-care decisions by providing evidence on the effectiveness, benefits, and harms of different treatment options. The evidence is generated from research studies that compare drugs, medical devices, tests, surgeries, or ways to deliver health care.

There are two ways that this evidence is found:

• Researchers look at all of the available evidence about the benefits and harms of each choice for different groups of people from existing clinical trials, clinical studies, and other research. These are called research reviews, because they are systematic reviews of existing evidence.
• Researchers conduct studies that generate new evidence of effectiveness or comparative effectiveness of a test, treatment, procedure, or health-care service.

Comparative effectiveness research requires the development, expansion, and use of a variety of data sources and methods to conduct timely and relevant research and disseminate the results in a form that is quickly usable by clinicians, patients, policymakers, and health plans and other payers. Seven steps are involved in conducting this research and in ensuring continued development of the research infrastructure to sustain and advance these efforts:

1. Identify new and emerging clinical interventions.
2. Review and synthesize current medical research.
3. Identify gaps between existing medical research and the needs of clinical practice.
4. Promote and generate new scientific evidence and analytic tools.
5. Train and develop clinical researchers.
6. Translate and disseminate research findings to diverse stakeholders.
7. Reach out to stakeholders via a citizens forum.

Common questions about comparative effectiveness research

Q: Why is comparative effectiveness research needed? What problem is it trying to solve?

• If you don’t get the best possible information about your treatment choices, you might not make an informed decision on what treatment is best for you.
• When you shop for a new car, phone or camera, you have lots of information about your choices. But when it comes to choosing the right medicine or the best health-care treatment, clear and dependable information can be very hard to find.
• It’s true that some treatments may not work for everyone, and that some treatments may work better for some people than others. This research can help identify the treatments that may work best for you.

Q: What are the practical benefits of comparative effectiveness research?

• You deserve the best and most objective information about treating your sickness or condition. With this research in hand, you and your doctor can work together to make the best possible treatment choices.
• For example, someone with high blood pressure might have more than a dozen medicines to choose from. Someone with heart disease might need to choose between having heart surgery or taking medicine to open a clogged artery. Reports on these topics and others include the pros and cons of all the options so that you and your doctor can make the best possible treatment decision for you or someone in your family.
• Every patient is different — different circumstances, different medical history, different values. These reports don’t tell you and your doctor which treatment to choose. Instead, they offer an important tool to help you and your doctor understand the facts about different treatments.

Related Content

Can I Trust This Information?

What Is the Research Process?

How are Comparative Effectiveness Reviews Conducted?

…and AHRQ Effective Health Care Program Links

Guides for Patients and Consumers include research reviews, research reports, and summary guides

Glossary of Terms

Personalization and Social Media Tools – These tools (as an email list)allow you to personalize your experience with the EHC Program Web site and share it with colleagues, family, and friends.

Related Articles

• Many new drugs did not have comparative effectiveness information available at time of FDA approval (eurekalert.org)
• The differences between comparative and clinical effectiveness (kevinmd.com)
• The Role of Data Mining in Cost Effectiveness Research (medicineandtechnology.com)
• The Newspeak of comparative effectiveness research (CER) (doctorrw.blogspot.com)
• CDISC Standards at Core of FDA Cross-study Clinical Trial Repository Project (prweb.com)
• National Library of Medicine Updates (aa47.wordpress.com)
• Shall I compare thee to another drug? (blogs.nature.com)

IOM and NAE launch collegiate challenge aimed at solving health problems

IOM and NAE launch collegiate challenge aimed at solving health problems
Through creative technology development

From the February 17, 2011 Eureka News Alert

(National Academy of Sciences) “Go Viral to Improve Health: IOM-NAE Health Data Collegiate Challenge” was launched today by the Institute of Medicine and National Academy of Engineering to promote interaction among future health professionals, engineers, and scientists and to spur interest in harnessing new technologies and data to solve vexing health issues.

WASHINGTON — “Go Viral to Improve Health: IOM-NAE Health Data Collegiate Challenge” was launched today by the Institute of Medicine and National Academy of Engineering to promote interaction among future health professionals, engineers, and scientists and to spur interest in harnessing new technologies and data to solve vexing health issues. The challenge calls on university and college students studying engineering, computer science, and health disciplines to work in interdisciplinary teams to transform health data into new mobile apps, online tools or games, or other innovative products that can improve health at the community level.

The first place team will receive a $3,000 prize and the opportunity to demonstrate their product during the plenary session of the annual Community Health Data Initiative Forum on June 9, 2011. The second and third place teams will receive awards of $2,000 and $1,000 respectively, and both will have the chance to display their winning technologies in the exhibit hall at this national gathering of software engineers, developers, and health leaders. All winning teams will be reimbursed for up to $1,000 of their travel costs to the forum.

Participating teams must develop a web-based or mobile product that tackles a health issue in a creative way and encourages people in a community to interact with one another. The launch of the challenge coincides with the debut of the Health Indicators Warehouse, a vast collection of health data and indicator sets made available by the U.S. Department of Health and Human Services. Teams must tap this online warehouse to create their interactive technologies. Entries will be judged on how well they integrate health data from the warehouse and other information sources as well as their creativity, design, usability, and potential for the product to make an impact on the health issue selected by the team.

Both undergraduate and graduate students may compete. Teams must consist of a minimum of two and up to five individuals and include at least one member pursuing a degree in engineering or computer science and at least one member pursuing a degree toward a career in any of the health professions. The submission deadline is April 27, 2011. A detailed description of “Go Viral to Improve Health: IOM-NAE Health Data Collegiate Challenge” can be found at IOM website and NAE website and on Facebook. Questions can be directed to goviral@nas.edu.

“The IOM-NAE Health Data Collegiate Challenge seeks to tap the creativity and skills of the nation’s brightest young minds because we believe they have the ability to harness health data in novel ways that will make a healthy difference to their communities and to the nation as a whole,” said IOM President Harvey V. Fineberg. “This challenge provides a unique chance to showcase the innovation that can result from interdisciplinary collaboration and also an opportunity for students to gain experience and skills that we hope they will carry into their careers.”

“The trove of health data made available by the U.S. Department of Health and Human Services provides a wonderful opportunity for creative young people to design the next ‘viral app’ — one that can improve personal health and extend lives,” said NAE President Charles M. Vest. “‘Advancing Health Informatics‘ was one of 14 Grand Challenges for Engineering identified by the NAE as game-changers in the 21st century, and the interdisciplinary collaboration being encouraged between the fields of engineering and health by this challenge is a key to meeting that goal.”

 

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The Institute of Medicine and National Academy of Engineering along with the National Academy of Sciences and National Research Council make up the National Academies. They are private, nonprofit institutions that provide science, technology, and health policy advice under a congressional charter. For more information, visit http://national-academies.org.

 

Making Scientific Research Accessible to All

 

Melissa Hagemann. Photo: Laura Brahm for the Open Society Foundations

 

 

[Related to recent posting here Access to Knowledge for Consumers]

Excerpts from the interview with Melissa Hagemann about the Open Access Movement.
She is program manager in the Open Society Foundations Information Program. She’s also on the advisory board of theWikimedia Foundation, which operates Wikipedia

What is “Open Access”?

Open Access refers to the free online availability of research literature. It was first defined at a meeting organized by the Open Society Foundations in 2001, which led to the Budapest Open Access Initiative.  This initiative outlined two strategies for developing OA:

• Open Access Journals, which are journals, freely available worldwide, which do not rely upon the traditional subscription-based business model to generate their revenue; and
• Open Repositories, or archives where all scholarly research articles published by those associated with a university or within a discipline can be deposited.

In 2003, we added a third strategy, which is to advocate for public access to publicly funded research.

What are some of the most notable accomplishments of the open access movement so far?

Probably the single most important victory was a mandate adopted by the U.S. Congress which stipulates that all research funded by the National Institutes of Health (about $29 billion annually) be made freely available online.

While the NIH is the largest funder of research in the world, the OA movement has worked with governments and universities throughout the world to adopt similar mandates, and today there are 230 of them. In addition, there are over 5,500 OA journals and over 1,700 open repositories.

What major obstacles does the movement face at this moment?

As Open Access is so new, one of our main challenges is simply raising awareness of it and explaining the benefits of this new model.  At the same time, you can imagine that many within the publishing industry haven’t always been keen supporters of OA.

But I’m curious: How can the publishing industry benefit from Open Access? Wouldn’t they say they need the money to continue publishing? How do you persuade them that OA is a good thing?

While OA journals are freely available online, about half of them charge a processing fee (anywhere from $500 to $3,000 or so) per article. So there are commercial OA journal publishers which are doing quite well. Actually one of the largest OA publishers, BioMed Central, was purchased by Springer (the second largest scientific journal publisher) in 2008, and Springer pledged to keep all of the journals OA.

How can others get involved in advancing the issue?

Participating in an event during OA week is a great way to start! Then I would suggest learning more about OA, and OASIS is one of the best resources for information on the OA movement.

• If you’re a student, I recommend connecting with the Right to Research Coalition.
• If you’re an academic, you can self-archive copies of your research articles in your institutional repository or submit your article to anOA journal. You can also advocate for your institution to adopt an OA mandate at your university; 230 mandates have been adopted worldwide (see www.eprints.org/openaccess/policysignup).
• If you’re in a developing or transition country, the EIFL Open Access Program offers a wealth of support and services for librarians, academics, policymakers, and funders in these countries to tap into.
• If you’re based in the United States, you can support the Alliance for Taxpayer Access, which advocates for public access to publicly funded research in the U.S.

 

 

 

 

 

 

How to Read a Research Paper (and also Understand Health News Research Items)

Biomedical research results are increasingly available to the public. However, caution is urged in interpreting results. For example, be very careful to not confuse causation with association.

(A recent news item about insulin use and cancer is very controversial. Some say insulin use can cause cancer, while others insist insulin users are predisposed to cancers.)

The MedlinePlus Topic Page Understanding Medical Research has links to tutorials, overviews, and more

A sampling of links

**Increasing Knowledge — How to Read a Research Paper(Lewy Body Dementia Association)

** Clinical Research & Clinical Trials(National Institute of Child Health and Human Development)

**Making Sense of Medical News (Nemours Foundation)

Related Blog Items

“Summaries for Patients” and other plain language summaries help patients and others understand medical studies and guidelines

Related articles

• NLM released several exciting enhancements that improve users’ ability to share and consume MedlinePlus content: (jflahiff.wordpress.com)
• Improving Health Care Decisions By Putting Research Into Practice (jflahiff.wordpress.com)

CDC Knowledge to Action Science Clips

 

 

The US Centers for Disease Control and Prevention (CDC) now posts weekly science clips which highlight new advances in applied public health research and prevention science which can improve health now. 

The issue for June 28th includes articles on condom use, influenza, drug safety, diabetes, vaccinations, cancer, hepatitis and more.

Wish to be receive updates from this Web site? The CDC provides options for email and RSS.