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Medical Information on Medical Information on the Internetthe Internet
Presented by Brenda F. BellPresented by Brenda F. [email protected]@webwarren.com
Before the Amateur Computing Group of New Before the Amateur Computing Group of New Jersey (ACGNJ)Jersey (ACGNJ)
2004 April 22004 April 2
Finding and using informationFinding and using information
What sort of information is available?What sort of information is available?
Where do I find the information I need?Where do I find the information I need?
What do I need to do to access it?What do I need to do to access it?
How reliable is the information?How reliable is the information?
Types of medical informationTypes of medical information
Consumer-level informationConsumer-level information
Medical newsMedical news
Medical researchMedical research
Professional-level informationProfessional-level information
Many different areas of informationMany different areas of information
Consumer-level informationConsumer-level information
General health informationGeneral health information e.g., e.g., WebMDWebMD, , Dr.KoopDr.Koop Anatomy and physiology, general health, medical Anatomy and physiology, general health, medical
conditions, diet/fitness/exerciseconditions, diet/fitness/exercise
Health and medical newsHealth and medical news e.g., e.g., ReutersReuters Health Health News bites – headlines of latest researchNews bites – headlines of latest research
Drug informationDrug information e.g., e.g., Eckerd.comEckerd.com, , CVS.comCVS.com, , Drugs.comDrugs.com Uses, interactions, reactionsUses, interactions, reactions
Medical newsMedical news
News wires (e.g. Reuters Health)News wires (e.g. Reuters Health)
Healthcare-provider news feeds Healthcare-provider news feeds MyDocOnlineMyDocOnline, , MyCareMyCare (through GreatWest) (through GreatWest)
Technical/scientific interest publicationsTechnical/scientific interest publications ScienceScience, , NatureNature
Medical-interest publicationsMedical-interest publications JAMAJAMA, , NEJMNEJM, Lancet, specialty magazines , Lancet, specialty magazines
(e.g. (e.g. Journal of Obesity ResearchJournal of Obesity Research))
Medical researchMedical research
Reviewed and refereed publicationsReviewed and refereed publications JAMAJAMA, , NEJMNEJM,, Lancet Lancet, etc., etc. Usually published by medical boards or professional Usually published by medical boards or professional
associationsassociations
University publicationsUniversity publications University departments, research journals, theses, University departments, research journals, theses,
etc.etc.
Self-publishedSelf-published Bristol-Meyers-Squibb, GlaxoSmithKline, Merck, Bristol-Meyers-Squibb, GlaxoSmithKline, Merck,
individual researchersindividual researchers
Professional-level informationProfessional-level information
Peer-reviewed journals (research and practices)Peer-reviewed journals (research and practices)
Medical-specialty associationsMedical-specialty associations American Society for Hypertension, etc.American Society for Hypertension, etc.
Pharmaceutical InformationPharmaceutical Information Drugs.com, pharmaceutical companiesDrugs.com, pharmaceutical companies
Medical education/continuing educationMedical education/continuing education
United States Government (NIH)United States Government (NIH)
Research and support organizationsResearch and support organizations March of Dimes, American Heart Association, etc.March of Dimes, American Heart Association, etc.
Areas of informationAreas of information
General health and fitnessGeneral health and fitness
DrugsDrugs
Specific diseases and health concernsSpecific diseases and health concerns
ResearchResearch
Best practicesBest practices
Medical educationMedical education
Finding the informationFinding the information
GoogleGoogle it it
Search within a general info site (WebMD, Search within a general info site (WebMD, Discovery Health Channel, etc.)Discovery Health Channel, etc.)
Go to your health insurance company’s Go to your health insurance company’s site and go to “health education”site and go to “health education”
Check out ReutersCheck out Reuters
Check medical journals, medical societies, Check medical journals, medical societies, disease societies, and the NIH directlydisease societies, and the NIH directly
Retrieving the informationRetrieving the information
Free sites Free sites (no registration necessary) (WebMD, (no registration necessary) (WebMD, Reuters Health, etc.)Reuters Health, etc.)Free, limited-identity registration Free, limited-identity registration (drugs.com)(drugs.com)Free, full-identity registration Free, full-identity registration ((The LancetThe Lancet – limited – limited accessaccess))Free to subscribers of related publications and sFree to subscribers of related publications and services ervices ((NatureNature, , ScienceScience, Healthgate, MyCare, etc.), Healthgate, MyCare, etc.)Paid subscriptions Paid subscriptions ((The LancetThe Lancet – full access, – full access, CSA databases, etc.)CSA databases, etc.)
Free sites (no registration)Free sites (no registration)
WebMD, Dr. Koop, etc.WebMD, Dr. Koop, etc.
Reuters Health Reuters Health
National Institutes of Health National Institutes of Health
Disease Research and Support SocietiesDisease Research and Support Societies
Professional Association SitesProfessional Association Sites
Drug ManufacturersDrug Manufacturers
PublishersPublishers (limited access) (limited access)
National Institutes of HealthNational Institutes of Health
Main site: Main site: http://nih.govhttp://nih.govSeveral subsidiary institutes, including:Several subsidiary institutes, including: National Cancer Institute National Cancer Institute
http://www.nci.nih.govhttp://www.nci.nih.gov National Institue on Aging National Institue on Aging http://http://
www.nia.nih.govwww.nia.nih.gov National Heart, Lung, and Blood Institute National Heart, Lung, and Blood Institute
http://http://www.nhlbi.nih.govwww.nhlbi.nih.gov National Institute of Diabetes & Digestive & National Institute of Diabetes & Digestive &
Kidney Diseases Kidney Diseases http://www.niddk.nih.govhttp://www.niddk.nih.gov
Disease research and supportDisease research and support
Some of the better-known of these include:Some of the better-known of these include: American Cancer SocietyAmerican Cancer Society American Diabetes AssociationAmerican Diabetes Association American Heart AssociationAmerican Heart Association March of DimesMarch of Dimes National Kidney FoundationNational Kidney Foundation United Cerebral PalsyUnited Cerebral Palsy
Others include:Others include: National Eating Disorders AssociationNational Eating Disorders Association National Rosacea SocietyNational Rosacea Society Neuropathy AssociationNeuropathy Association
Professional associations Professional associations (partial list)(partial list)
American Academy of Family PhysiciansAmerican Academy of Family Physicians
American Association of Neurological SurgAmerican Association of Neurological Surgeonseons
American Board of Internal MedicineAmerican Board of Internal Medicine
American Board of Medical SpecialtiesAmerican Board of Medical Specialties
American Dietetic AssociationAmerican Dietetic Association
Browse carefully: not all of these associations Browse carefully: not all of these associations have useful information for the medical have useful information for the medical consumerconsumer!!
Drug manufacturers (partial list)Drug manufacturers (partial list)
AstraZenecaAstraZeneca
AventisAventis
BayerBayer
Bristol-Myers SquiBristol-Myers Squibbbb
GlaxoSmithKlineGlaxoSmithKline
MerckMerck
NovartisNovartis
PfizerPfizer
RocheRoche
Also check the Web sites for specific drugs and brands: e.g., Avandia, Nexium, Zocor, etc.; Ascensia, Accu-Chek, etc.
Publishers’ sitesPublishers’ sites
Usually title or title/abstract onlyUsually title or title/abstract onlySometimes requires registration, Sometimes requires registration, sometimes doesn’tsometimes doesn’tPay-per-article usually available for full-Pay-per-article usually available for full-texttextExamplesExamples New England Journal of MedicineNew England Journal of Medicine The LancetThe Lancet (requires registration) (requires registration) Springer-VerlagSpringer-Verlag KluwerKluwer
Free, with limited registrationFree, with limited registration
Drugs.comDrugs.com Free access to consumer informationFree access to consumer information E-mail and login-name access to professional-E-mail and login-name access to professional-
level informationlevel information
Free, with full-identity Free, with full-identity registrationregistration
The LancetThe Lancet Free access to titles, many abstracts, Free access to titles, many abstracts,
selected full-texts/.pdfsselected full-texts/.pdfs Paid/subscriber access to other abstracts and Paid/subscriber access to other abstracts and
most full-text/.pdfsmost full-text/.pdfs
Journal of the American Medical AssociatiJournal of the American Medical Association (JAMA)on (JAMA) Limited archive access (six months to five Limited archive access (six months to five
years old) for registered guestsyears old) for registered guests
Free to subscribers of related Free to subscribers of related publications and servicespublications and services
NatureNature Group publications Group publications Full-text/.pdf access to subscribed publicationsFull-text/.pdf access to subscribed publications Title/abstract access to the company’s other Title/abstract access to the company’s other
publicationspublications
American Association for the Advancement of SAmerican Association for the Advancement of Sciencecience Online access to subscribed publications (e.g., Online access to subscribed publications (e.g.,
ScienceScience)) Free access to news items and title/abstract search of Free access to news items and title/abstract search of
other group publicationsother group publications
Paid subscription requiredPaid subscription required
The LancetThe Lancet – full text, all .pdfs – full text, all .pdfsScienceScience – full text, all .pdfs – full text, all .pdfsNatureNature – full text, all .pdfs – full text, all .pdfsMedline – abstracts through Medline – abstracts through PubMedPubMed (National (National Library of Medicine)Library of Medicine)New England Journal of MedicineNew England Journal of Medicine – free – free abstracts, full-text for subscribersabstracts, full-text for subscribersCambridge Scientific AbstractsCambridge Scientific Abstracts Aggregator for databases including Medline, AIDS Aggregator for databases including Medline, AIDS
and Cancer Research Abstracts, Physical Education and Cancer Research Abstracts, Physical Education Index, and othersIndex, and others
How reliable is the information?How reliable is the information?
Is the source an “industry-respected” Is the source an “industry-respected” source of information?source of information?Is the publisher or site owner trying to sell Is the publisher or site owner trying to sell something?something?Does the author, publisher, or site owner Does the author, publisher, or site owner have an “agenda”?have an “agenda”?Is the information presented as “medical Is the information presented as “medical information”, “advice”, or “personal information”, “advice”, or “personal observation”?observation”?
““Industry-respected” sourcesIndustry-respected” sources
Refereed journalsRefereed journals
Vetted news sourcesVetted news sources
Well-known health-and-medicine sitesWell-known health-and-medicine sites
Government sites and publicationsGovernment sites and publications
Medical specialty associationsMedical specialty associations
Medical education sourcesMedical education sources
Research-and-support associationsResearch-and-support associations
Manufacturers’ information for professionalsManufacturers’ information for professionals
Refereed journalsRefereed journals
Articles written by investigators who are Articles written by investigators who are professionals in the fieldprofessionals in the field
Articles are reviewed, commented on, and Articles are reviewed, commented on, and sent back for correction by other professionals sent back for correction by other professionals in the fieldin the field
Extensively foot-noted, with complete Extensively foot-noted, with complete referencesreferences
Conflicts of interest (employers, employment Conflicts of interest (employers, employment histories, funding sources) are notedhistories, funding sources) are noted
Vetted news sourcesVetted news sources
Items reviewed by medical professionals Items reviewed by medical professionals Most newspaper, newswire, and television “health reports” and Most newspaper, newswire, and television “health reports” and
“medical” columns are written/edited by medical doctors“medical” columns are written/edited by medical doctors
““News bites” are “short and attention-getting”News bites” are “short and attention-getting” Only the most sensationalistic information is givenOnly the most sensationalistic information is given The findings may be anomalous in contextThe findings may be anomalous in context The findings may not apply in your caseThe findings may not apply in your case
Small-sample, short-term research – long-term effects?Small-sample, short-term research – long-term effects?Small segments of the population – specialized careSmall segments of the population – specialized care
Medical databases often follow similar editorial Medical databases often follow similar editorial guidelinesguidelines
Scope and coverage usually limited to refereed journals and Scope and coverage usually limited to refereed journals and conference proceedingsconference proceedings
Not all journals and conferences are sponsored by the medical Not all journals and conferences are sponsored by the medical industriesindustries
Well-known health-and-medicine Well-known health-and-medicine sitessites
Information designed for public Information designed for public understandingunderstanding
Editors are usually medical professionalsEditors are usually medical professionals
Detailed information sometimes availableDetailed information sometimes available
Links to further information availableLinks to further information available Professional associationsProfessional associations NIH institutesNIH institutes Research-and-support associationsResearch-and-support associations
Government sites and publicationsGovernment sites and publications
Written/edited by professionals in the Written/edited by professionals in the specialtyspecialty
At its best, vetted by “the best in the At its best, vetted by “the best in the business”business”
Extensive information at both provider and Extensive information at both provider and consumer levelsconsumer levels
Government sites and publications Government sites and publications (continued)(continued)
Alert:Alert: Government is not always unbiased Government is not always unbiasedPublic positions may be altered byPublic positions may be altered by Industry lobbyistsIndustry lobbyists Fear of public perceptionFear of public perception Professional conflicts of interestProfessional conflicts of interest
Agency heads may have ties to industry giantsAgency heads may have ties to industry giants
Agency to agency conflictsAgency to agency conflicts e.g., NIH v. FDA v. USDAe.g., NIH v. FDA v. USDA Different industries lobbyingDifferent industries lobbying Different conflicts of interestDifferent conflicts of interest
Usually promote old, minimum standardsUsually promote old, minimum standards
Medical specialty associationsMedical specialty associations
By and for professionals in the specialtyBy and for professionals in the specialty
Often certify and credential professionals in that Often certify and credential professionals in that specialtyspecialty
Information for professionals is highly-targetedInformation for professionals is highly-targeted Information may be vetted/reviewedInformation may be vetted/reviewed Information may be unreviewed, awaiting for Information may be unreviewed, awaiting for
members to review, comment, and follow upmembers to review, comment, and follow up
Information for the public is usually reviewed and Information for the public is usually reviewed and specificspecific
Medical educationMedical education
Medical schoolsMedical schools Highly-knowledgeable educators Highly-knowledgeable educators Numerous research projectsNumerous research projects
University hospitalsUniversity hospitals Sites of much medical researchSites of much medical research Most-difficult-to-treat patients usually referred hereMost-difficult-to-treat patients usually referred here
Medical continuing educationMedical continuing education Updates on industry standards-of-careUpdates on industry standards-of-care Information on new specializationsInformation on new specializations Usually have to pay for courses and show credentials Usually have to pay for courses and show credentials
to see infoto see info
Research-and-support associationsResearch-and-support associations
Aimed at healthcare providers, caregivers, and Aimed at healthcare providers, caregivers, and persons with the disease/condition in questionpersons with the disease/condition in question
Donations fund cutting-edge researchDonations fund cutting-edge research
Experimental/investigatory information often Experimental/investigatory information often availableavailable You may need to show/fake credentialsYou may need to show/fake credentials You may have to pay to see itYou may have to pay to see it
Sometimes the source for standards of care for Sometimes the source for standards of care for the disease/conditionthe disease/condition
Manufacturers’ informationManufacturers’ information
Pharmaceutical companiesPharmaceutical companies Professional-info sheets available in .pdf formatProfessional-info sheets available in .pdf format Subject-population information providedSubject-population information provided Prescription, counterindication, and side-effect information Prescription, counterindication, and side-effect information
providedprovided Agenda: to sell more drugs!Agenda: to sell more drugs!
Medical device companiesMedical device companies Specifications on devicesSpecifications on devices How/where to useHow/where to use
e.g., trocars (for laparoscopic/arthroscopic surgery), imaging e.g., trocars (for laparoscopic/arthroscopic surgery), imaging devicesdevices
Aimed at medical professionalsAimed at medical professionals Agenda: to sell their brand of device!Agenda: to sell their brand of device!
““Hidden” sales pitchesHidden” sales pitches
Manufacturers, vendors, and distributorsManufacturers, vendors, and distributors Directly influence professionals and prescribersDirectly influence professionals and prescribers Influence prescribers through patientsInfluence prescribers through patients Direct to patientDirect to patient
Researchers’ funding sourcesResearchers’ funding sources Industry-sponsored grants, stipends, and fellowshipsIndustry-sponsored grants, stipends, and fellowships Past or present industry employment historyPast or present industry employment history
Representing the corporate agendaRepresenting the corporate agendaNon-competition agreements skew post-employment researchNon-competition agreements skew post-employment research
““Unbiased” funders’ ties to industryUnbiased” funders’ ties to industry Corporate contributions to universitiesCorporate contributions to universities Industry influence on government-funded researchIndustry influence on government-funded research
““My (Not-So-)Hidden Agenda”My (Not-So-)Hidden Agenda”
““Dissing” the standardsDissing” the standards
Selling a serviceSelling a service
““Dissing” the standardsDissing” the standardsGripe boardsGripe boards
““I had this problem, and the care I got left me in worse I had this problem, and the care I got left me in worse shape than when I began”shape than when I began”
Selling a viewpointSelling a viewpoint ““Government/industry is bad by definition”Government/industry is bad by definition” ““Dietary Supplements are a way of life”Dietary Supplements are a way of life”
Selling “snake oil”Selling “snake oil” ““Fad diets”Fad diets” ““Bad” or “Dangerous” foods/medicationsBad” or “Dangerous” foods/medications Selling unproven supplementsSelling unproven supplements
Alert:Alert: these are often supported by specious, these are often supported by specious, unsupported, or improperly-documented unsupported, or improperly-documented “research”“research”
Selling a serviceSelling a service
Hospitals, doctors, medical clinicsHospitals, doctors, medical clinics Dermatology, plastic surgery, cosmetic surgery, Dermatology, plastic surgery, cosmetic surgery,
cosmetic dentistry, etc.cosmetic dentistry, etc.
Delivery of medical suppliesDelivery of medical supplies ““Covered by” Medicaid, Medicare, insuranceCovered by” Medicaid, Medicare, insurance Supplier’s own “low-cost program”Supplier’s own “low-cost program”
Medical insuranceMedical insurance Medicare supplemental insurance, etc.Medicare supplemental insurance, etc. Pharmaceutical insurancePharmaceutical insurance Beware of “too good to be true” offersBeware of “too good to be true” offers
Often high-premiums, difficult-to-qualify, limited coverageOften high-premiums, difficult-to-qualify, limited coverage
What is the site’s goal?What is the site’s goal?
Medical informationMedical information
Medical adviceMedical advice
Personal observationPersonal observation
Medical informationMedical information
Should be vetted or reviewedShould be vetted or reviewed
If not an “industry-respected” publication, If not an “industry-respected” publication, reviewers names and credentials should reviewers names and credentials should be listedbe listed
Reviewers’ names are prominently listed at Reviewers’ names are prominently listed at the end of all WebMD articlesthe end of all WebMD articles
Beware of snake-oil salesmenBeware of snake-oil salesmen
““Medical advice”Medical advice”
Cannot ethically be given over the Internet as Cannot ethically be given over the Internet as suchsuchAny medical advice given should:Any medical advice given should: Be couched in “weasel-words”Be couched in “weasel-words”
““generally”, “in most cases”, “based on your information”, “I’d generally”, “in most cases”, “based on your information”, “I’d suggest”suggest”
Be given by named, credentialed professionalsBe given by named, credentialed professionals Include disclaimersInclude disclaimers
““this is not medical advice”, “see your doctor”, “this [advice, this is not medical advice”, “see your doctor”, “this [advice, prescription, etc.] may not be right for you”prescription, etc.] may not be right for you”
Anyone purporting to give actual Anyone purporting to give actual medical advicemedical advice over the Internet probably has an “agenda”over the Internet probably has an “agenda”
Blogs, guestbooks, and personal Blogs, guestbooks, and personal storiesstories
Single points of viewSingle points of view Highly subjectiveHighly subjective
Anecdotal, even if many supporting stories are givenAnecdotal, even if many supporting stories are given Not useful for determining if something is “bad” or “good” in Not useful for determining if something is “bad” or “good” in
generalgeneral Observations not conducted under controlled circumstancesObservations not conducted under controlled circumstances
The wrong thing may be praised/blamedThe wrong thing may be praised/blamedNo way to tell if there’s a direct cause and effectNo way to tell if there’s a direct cause and effect
Can be useful if you want to know what Can be useful if you want to know what cancan go right or go right or wrong with a particular treatmentwrong with a particular treatment
Just remember it may not apply to you as an individualJust remember it may not apply to you as an individual
NotNot reliable sources of medical information reliable sources of medical information
SummarySummaryThere are many types of medical content available on There are many types of medical content available on the Internet, geared to many levels of surferthe Internet, geared to many levels of surferSome of it is free, some of it you have to pay forSome of it is free, some of it you have to pay for
Sometimes it helps to know where to look or what to look forSometimes it helps to know where to look or what to look for You may need to register with a site to access some or all of the You may need to register with a site to access some or all of the
free stufffree stuff
Some of it is extremely reliable, some of it is not at all Some of it is extremely reliable, some of it is not at all reliablereliable
Evaluate the content based onEvaluate the content based onWhere it comes fromWhere it comes fromWho’s paying for itWho’s paying for itWhat the authors’ and/or publishers’ agendas areWhat the authors’ and/or publishers’ agendas are
Always consult your personal healthcare team before Always consult your personal healthcare team before making any changes to your personal regimenmaking any changes to your personal regimen