Role of Consumer Networks in Evidence Based Health Information

11 11 2009

Guest author: Janet Wale
member of the Cochrane Consumer Network

People are still struggling with evidence or modern medicine – clinicians, patients, health consumers, carers and the public alike. Part of this is because we always thought medicine was based on quality research, or evidence. It is not only that. For evidence to be used most effectively in healthcare systems researchers, clinicians and ‘the existing or potential patients and carers’ have to communicate and resonate with each other – to share knowledge and responsibilities both in developing the evidence and in individual decision making. On the broader population level, this may include consultation but is best achieved by developing partnerships.

The Cochrane Collaboration develops a large number of the published systematic reviews of best evidence on healthcare interventions, available electronically on The Cochrane Library. Systematic reviews are integral to the collation of evidence to inform clinical practice guidelines. They are also an integral part of health technology assessments, where the cost-effectiveness of healthcare interventions is determined for a particular health system.

With the availability of the Internet we are able to readily share information. We are also acutely aware of disadvantage for many of the World’s populations. What this has meant is pooled efforts. Now we have not only the World Health Organization but also The Cochrane Collaboration, Guidelines International Network, and Health Technology Assessment International. What is common among these organizations? They involve the users of health care, including patients, consumers and carers. The latter three organizations have a formal consumer/patient and citizen group that informs their work. In this way we work to make the evidence relevant, accessible and being used. We all have to be discerning whatever knowledge we are given and apply it to ourselves.

This is  a short post on request.
It also appeared as a comment at:
http://e-patients.net/archives/2009/11/tell-the-fda-the-whole-story-please.html

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Time to weed the (EBM-)pyramids?!

26 09 2008

Information overload is a major barrier in finding that particular medical information you’re really looking for. Search- and EBM-pyramids are designed as a (search) guidance both for physicians, med students and information specialists. Pyramids can be very handy to get a quick overview of which sources to use and which evidence to look for in which order.

But look at the small collection of pyramids I retrieved from Internet plus the ones I made myself (8,9)………

ALL DIFFERENT!!!!

What may be particularly confusing is that these pyramids serve different goals. As pyramids look alike (they are all pyramids) this may not be directly obvious.

There are 3 main kinds of pyramids (or hierarchies):

  1. Search Pyramid (no true example, 4, 5 and 6 come closest)
    Guiding searches to answer a clinical question as promptly as possible. Begin with the easiest/richest source, for instance UpToDate, Harrison’s (books), local hospital protocols or useful websites. Search aggregate evidence respectively the best original studies if answer isn’t found or doubtful.
  2. Pyramid of EBM-sources (3 ,4, 8 )
    Begin with the richest source of aggregate (pre-filtered) evidence and decline in order to to decrease the number needed to read: there are less EBM guidelines than there are Systematic Reviews and (certainly) individual papers.
  3. Pyramid of EBM-levels (1, 2, 5, 7, 9)
    Begin to look for the original papers with the highest level of evidence.
    Often only individual papers/original research, including Systematic Reviews, are considered (1, 9), but sometimes the pyramid is a mixture of original and aggregated literature (2,5)
  4. A mixture of 2, 3 and/or 4 (2,5)

Further discrepancies:

  • Hierarchies.
    • Some place Cochrane Systematic Reviews higher than ‘other systematic reviews’, others place meta-analysis above Systematic reviews (2,6). This is respectively unnecessary or wrong. (Come back to that in another post).
    • Sometimes Systematic reviews are on top, sometimes Systems (never found out what that is), sometimes meta-analysis or Evidence based Guidelines
    • Synopses (critically appraised individual articles) may be placed above or below Syntheses (critically appraised topics).
    • Textbooks and Reviews may at the base of the pyramid or a little more up.
    • etcetera
  • Nomenclature
    • Evidence Summaries ?= Summaries of the evidence? = Evidence Syntheses? = critically appraised topics?
    • Etcetera
  • Categorization
    • UpToDate is sometimes placed at the top of the pyramid in Summaries (4) OR at the base in Textbooks (5), where I think it should belong in terms of evidence levels, but not in terms of usefulness.
    • DARE is considered a review, but it is really a synopsis (critical appraised summary) of a Systematic Review.

Isn’t it about time to weed the pyramids rigorously?

Are pyramids really serving the aim of making it easier for the meds to find their information?

Like to hear your thoughts about this.

What my thoughts are? I will give a hint: I would rather guide the informationseeker through different routes, dependent on his background, question, available time and goal. The pyramid of evidence sources and the levels of evidence would just be part of that scheme, ideally.

Will be continued….





Minder uitleningen door internet

29 05 2008

Gelezen: Amstelveens Weekblad, 28-5-2008

Onder invloed van toenemend gebruik van internet leent Bibliotheek Amstelveen minder boeken uit. Het totaal aantal uitleningen daalde vorig jaar met 4%, maar dit kwam geheel op het conto van informatieve boeken, vooral die met gezondheidsinformatie. Daarentegen bleven uitleningen van fictie nagenoeg gelijk en boeken over koken, geschiedenis e.d. onverminderd populair.

De invloed van internet manifesteert zich ook op een andere manier: 42% van de verlengingen en 28% van de reserveringen vinden nu plaats langs digitale weg. Het digitaal aanvragen en uitlenen van muziek gaat in de toekomst belangrijker worden.

Opvallend, maar ook wel verklaarbaar dat juist gezondheidsinformatie steeds meer via het internet gezocht wordt. Er zijn vele gezondheidssites, en de informatie is veel actueler èn sneller te vinden dan in boeken. Ik zat gisteren nog met een medische vraag die ik echt in 5 seconden beantwoord zag op internet, op een tijdstip dat de bibliotheek allang dicht was.

Dat was toch wel heel anders in de tijd dat je het moest stellen met een (oppervlakkige en slecht doorzoekbare) medische encyclopedie thuis en je voor elke andere zoekactie overdag op je fiets naar de bieb moest. Maar dat was dan nog wel zo’n klein filiaal om de hoek met ruime openingstijden.

De ander kant van de medaille is wel dat lang niet alle informatie op internet betrouwbaar is. Hoe vaak beweren mensen niet dat (wetenschappelijk) bewezen is dat een of andere middeltje goed werkt. Hebben ze het van een of andere (gekleurde) commerciële of persoonlijke internetsite.

Er ligt nog een schone taak om mensen te leren hoe goed op internet hun weg te vinden en het kaf van het koren te scheiden. Een schone taak, maar voor wie?

Bovenstaande informatie kunt u ook vinden in het jaarverslag van 2007 van Bibliotheek Amstelveen.

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Read in a local newspaper (2008-05-28).

Our Public Library noticed a decline in book lending. Interestingly, this was not due to a decreased borrowing of adult fiction or books on history and cooking. It was entirely due to a declined lending of informative books, especially those on health information. Presumably because of the increased use of internet for this purpose.