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