Medical Information on Medical Information on the Internetthe Internet

Presented by Brenda F. BellPresented by Brenda F. Bellarachne@webwarren.comarachne@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