Glossary | The Cochrane Collaboration (worth bookmarking)

examples:

Adverse effect search for term

An adverse event for which the causal relation between the drug/intervention and the event is at least a reasonable possibility. The term ‘adverse effect’ applies to all interventions, while ‘adverse drug reaction’ (ADR) is used only with drugs. In the case of drugs an adverse effect tends to be seen from the point of view of the drug and an adverse reaction is seen from the point of view of the patient.See also: Adverse event, Side effect Also called: Adverse reaction

Baseline characteristics search for term

Values of demographic, clinical and other variables collected for each participant at the beginning of a trial, before the intervention is administered.

Causal effect search for term

An association between two characteristics that can be demonstrated to be due to cause and effect, i.e. a change in one causes the change in the other. Causality can be demonstrated by experimental studies such as controlled trials (for example, that an experimental intervention causes a reduction in mortality). However, causality can often not be determined from an observational study.

blog: Does Cochrane have a plan for consumer participation? | Cochrane Consumer Network

webconference - Grey Literature - consumer's perspective section (free web conference)

Grey Lit 102: Advanced Search Strategies for Grey Literature

NEW: View the Grey Lit 102 archived recording and access the presentation slides here. 

Date: Thursday, April 7, 2011 12:00 p.m.-1:00 p.m. (EDT) 
Course Level: 101
Faculty: Melissa Ratajeski, M.L.I.S., R.L.A.T.,  University of Pittsburgh; Ahlam Saleh, M.D., M.L.S., University of Pittsburgh
Duration: 60 min.

Overview:  This free Web conference (the "consumer's" perspective) discussed the challenges inherent in conducting advanced searches for grey literature and presents tactics for overcoming these challenges. Participants in this session learned:

• Who are the major users of grey literature, and why?
• What are best practices for searching and incorporating grey literature evidence into larger research efforts?
• Is it possible to systematically review grey literature (why or why not)?
• Are there critical assumptions or search parameters that can target a search and efficiently find desired evidence?

call for papers: Measuring Consumer Involvement in Health and Social Care: Dividing fact from fiction | Cochrane Consumer Network

pilot program - Drug mishap reporting system created for consumers - Canadian Medical Association Journal

Note: the article does not mention until the final statements that this is a pilot project NOR does the website



The new national medication incident reporting system is the first of its kind to directly engage Canadian consumers

http://safemedicationuse.ca/report/index.html

"Health care practitioners and hospitals have been reporting medication incidents using similar tools for years, but there’s never been a formal mechanism to collect incident reports from consumers," says Bonnie Salsman, project lead for the website, which was developed with support from Health Canada.


In the past, if a consumer wanted to report a medication mistake, they had to use a tool designed for health care workers, or else ask a medical practitioner to report the incident on their behalf.


"It wasn’t a consumer-friendly process. It was really difficult for people to get their concerns heard without doing a considerable amount of footwork first," says Salsman. "That there were still patients who took the initiative to report incidents using the practitioner reporting system showed us how helpful a consumer tool would be."


The website offers Canadians a simplified form to report any medication incident involving the use of prescription and nonprescription drugs, natural health products, imported products, or devices used to administer medicine. Consumers can report incidents that occur at any stage in the prescribing, dispensing, administration, or monitoring of a medication. They can also offer their own suggestions on how to avoid similar mishaps in future....cont'd

According to the 2008 Commonwealth Fund International Health Policy Survey of Sicker Adults, 1 in 10 Canadians with health problems have reported receiving the wrong medication or doses when filling a prescription or when hospitalized in the last two years, while nearly 1 in 7 said they had experienced a medication error in the past two years.
The Institute for Safe Medication Practices Canada will continue to monitor the success of the website’s pilot phase in the coming months, and expects to report preliminary results to Health Canada this fall.

ISMP Canada will:

• review your report
• look for system problems that could cause errors to happen
• prepare recommendations that are designed to prevent mistakes with medication
• send recommendations about medication safety to health professionals and consumers
• provide consumer-focused information and tips about medication safety on the SafeMedicationUse.ca website

ISMP Canada will not:

• investigate a complaint on your behalf with an organization or health professional that is responsible for an error in care
• investigate the actions of individual practitioners
• report (for disciplinary purposes) the incident to professional authorities responsible for regulating the practice of health professionals
• release or publish any information that could identify the reporter of an incident, a patient, a health professional or an organization involved in an incident

Health Affairs -- Comments on: Evidence That Consumers Are Skeptical About Evidence-Based Health Care

Evidence That Consumers Are Skeptical About Evidence-Based Health Care -- abstract/free full access

Note: some key excerpts (U.S. research):

"Beliefs And Values Study participants consistently voiced a number of values and beliefs that were at odds with evidence-based approaches." "All Care Meets Minimum Quality Standards: Although focus-group participants could envision a health care provider’s making an occasional mistake, they found it hard to believe that providers could deliver truly substandard care—and certainly not their own providers."
"Behaviors In The Medical Encounter Our survey results indicate that many consumers do not engage in behaviors that could be beneficial to them during medical encounters. More than half of the respondents had never taken notes during a medical appointment (55 percent) or brought online information to discuss with their doctor (60 percent). Almost half had never brought someone to provide support or advocacy (44 percent). In addition, 28 percent of the respondents had never brought questions to ask their doctor (Exhibit 3)."
"Effective communication with and support of consumers is essential to improving the quality of health care and containing health care costs. Clearly, consumers will revolt if evidence-based efforts are perceived as rationing or as a way to deny them needed treatment. Policy makers, employers, health plans, providers, and researchers will thus need to translate evidence-based health care into accessible concepts and concrete activities that support and motivate consumers. A necessary condition for effective communication, after all, is to start where your audience is—even if that is not where you hoped or expected it to be."

Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material.

Authors’ conclusions There is little evidence from randomised controlled trials of the effects of consumer involvement in healthcare decisions at the population level. The trials included in this review demonstrate that randomised controlled trials are feasible for providing evidence about the effects of involving consumers in these decisions.
   Comment 1:This paper is an issue for public health policy-makers not clinicians. Consumer involvement has a great risk of being tokenistic.  Comment 2:As a community health professional, the results will serve as an evidence to involve health care consumers in the process of policy and guideline formulation.  Comment 3:
The evidence presented that face-to-face interactions with consumers is the most effective type of involvement for developing patient educational materials is helpful for clinicians.

About consumer participation | Cochrane Consumer Network

Note: "prioritise topics for new reviews"
In response to a request from the Cochrane Network, ovarian cancer women/caregivers were asked to respond to a survey regarding priortisation. This was done, in part, through the ACOR Ovarian Cancer group (http://www.acor.org). A large response was received and the Cochrane Network responded in a positive manner.

 

About consumer participation

The authors of Cochrane reviews may consider a question for a review because of their own interests and experiences as a clinician or a healthcare researcher. These are not always the questions that are of most concern to healthcare consumers and their families and carers.

It is not easy for us, the public, to understand how the questions for Cochrane reviews need to be stated in order to be ‘answerable’ in research terms. You can learn more about this from our Training materials on the Resources webpage.

The purpose of consumer input during the review process is to:

• ensure that a review question is relevant to people requiring health care and who are offered an intervention by their healthcare providers;
• identify outcomes from healthcare interventions that are important for consumers – which may be different from those identified by service providers;
• improve access to reviews by ensuring that the review can be read by a wide audience, and the language is sensitive to consumers;
• weigh up the benefits of a healthcare intervention against the potential harms – from a healthcare user perspective;
• prioritise topics for new reviews.

Information for consumers | The Cochrane Collaboration

Consumers Slow to Embrace the Age of Genomics - NYTimescom Andy Pollack

European Medicines Agency (EMA): the Agency takes a further step in its interaction with patients and consumers | A global voice for patients

REFLECTION PAPER ON THE FURTHER INVOLVEMENT OF PATIENTS AND CONSUMERS IN THE AGENCY’S ACTIVITIES

Open Poll - Pelvic Exams While Under Anesthesia

Poll is Open
please contribute your views (men & women)
Patients, Consumer and Health Care Professionals

Cochrane Canada Symposium (includes consumers/patients)

Subject: Cochrane Canada Symposium

Workshop: Cochrane Canada 8th Annual Symposium - Evidence in Uncertain Times: Meeting the Challenge
Date: 19-20 May 2010, Presymposium: 17-18 May 2010
Location: Ottawa, Ontario, Canada
Details: We invite researchers, health policy makers and managers, health professionals, and patients to join the Canadian Cochrane Centre as we discuss Evidence in Uncertain Times at our 8th annual symposium. Abstract submission for workshop, oral and poster presentations is open until 12 February 2010. Early Bird registration ends on 19 March 2010
Email: ccnc.symposium@uottawa.ca
Website: www.ccncsymposium.com 

Cochrane Symposium - Ottawa May 2010

Upcoming Cochrane Collaboration conference includes seminars for consumers/patients