Creating a culture of consumer advocacy for our students

1. Creating a culture of consumer advocacy for our students Mary Ann McLane, PhD, CLS(NCA) Associate Professor Department of Medical Technology University of Delaware mclane@udel.edu, 302-831-8737 CLEC 2006

2. Objectives • Compare and contrast “diagnosis” and “assessment” • Correlate the experience gained through a CLS/CLT curriculum with the ability to formulate laboratory assessments • Use actual consumer questions to foster consumer advocacy in CLS/CLT curricula

3. “..culture of consumer advocacy..” • The need… • Since 1999, over fifteen thousand questions about laboratory testing have come to the ASCLS consumer webpage team

4. “..culture of consumer advocacy..” • 1999: fewer than 1 question per day • 2005: average of 65 questions per day! We always need and welcome new volunteers.

5. CI requests by discipline Hematology 15 - 20% Chemistry 60 – 65% Immunology 20 - 30% Microbiology 0 – 5%

6. “..culture of consumer advocacy..” • The need… • Since 1999, over fifteen thousand questions about laboratory testing have come to the ASCLS consumer webpage team • To Err Is Human • The Quality Chasm

7. “..culture of consumer advocacy..” • The need… • “we don’t diagnose!” mentality

8. “..culture of consumer advocacy..” • The need… • “we don’t diagnose!” translates into: • We cannot use our talents and hard-won knowledge/skill to make the connections we were taught to make in school… I will be reprimanded if I dare to link our testing to diseases, and actually tell someone • All those case studies that we loved so much were just a school exercise • Don’t ask me anything about micro since I no longer remember it! bunk! bunk! semi-bunk!

9. “..culture of consumer advocacy..” • The need… • Fewer clinical pathologists • Shorter times in the clinician’s office • Baby boomers who question everything! • Other healthcare professionals easily step into the role of providing lab testing info to those with questions, despite their NOT being the experts • Nurses, diabetes counselors, pharmacists…

10. “..culture of consumer advocacy..” • The solution… • Realize what we do is “laboratory assessment” and not “medical diagnosis” • Just as valid as nursing, PT, pharmacy, OT, nutritional, etc. assessments • Include this as an expectation for our students and colleagues, alike

11. “..culture of consumer advocacy..” • The solution… • Independent Practice, 2001 • As professionals, clinical laboratory scientists have the requisite knowledge and skills to… interpret laboratory tests… and collaborate in the diagnosis and treatment of patients by implementing initial and reflex testing protocols within prescribed guidelines.

12. “..culture of consumer advocacy..” • The solution… • Scope of Practice, 2001 • Clinical laboratory scientists may appropriately provide… • Advice upon the design and service scope of clinical laboratories; • Advice to physicians in the appropriate utilization, selection and sequencing of clinical laboratory tests and, in collaboration with attending physicians, determining clinical correlations and interpretations of the quality and utility of specific laboratory results; • Advice to other users and consumers of clinical laboratory testing services upon appropriate use, maintenance, quality assurance and other procedural and informational requirements.

13. “..culture of consumer advocacy..” • The solution… • Direct Access Testing, 2004 • …it is the role of certified clinical laboratory scientists to consult with consumers about the purpose of laboratory tests and the general meaning of laboratory results in whatever setting those test results are generated, including direct access testing.

14. A first step for developing the culture • Junior/senior level CLS courses • Insights into the legal, ethical and “user-friendly” aspects of responding to consumer questions • Use of questions from ASCLS Consumer Webpage

15. A first step for developing the culture • Depth of knowledge needed is very obvious • Hints at need for continuing education after graduation • Questions more realistic than synthetic ones in most texts • Will automatically contain not just the question but the anxiety, the confusion…

16. A first step for developing the culture • Topics easily interwoven • Quality assurance Clinical Correlations • Statistics Empathy • Method comparison Ethics • Attendance at annual Legislative Symposium • Legislators need to be educated, too!

17. A first step for developing the culture • University of Delaware syllabus for MEDT401 • “Patient Advocacy within the Medical Technologist’s Scope of Practice”

18. Hematology Examples • My hematocrit was 16 and I had to have an infusion, but I am still suffering with headaches. Is it normal to have headaches with a low hematocrit? • My WBC is 3.2 and the range is 4.0 – 10.0. • The doctor told me my lab tests were fine, but on my copy there is an “H” next to the MPV of 10.7.

19. Just a little information, please • I was wondering if you could answer a question about leukemia for me. I need to know what types of blood tests are done on what types of cells and possibly a few details on each of them to diagnose leukemia.

20. Healthcare provider examples • What is the quickest and most efficient way for a patient to increase their hematocrit level? • I just had a routine physical exam. I’m an RN and would like to know what a platelet count of 700,000 and a WBC of 21,000 indicates. Why am I being sent to a hematologist?

21. Worried mother • My son is a 5 years and 3 month old Chinese boy. His segs is too low and his lymphs is too high. He did not have any symptoms when I brought him for the blood test. I am really concerned. Do you think he may be infected with HIV. Do you think he may have leukemia?

22. Patients’ right to know • I just finished treatment for dysgerminoma and had my follow up blood work. I am concerned about my eosinophil percentage of 34.0 when the range is 0-4. I called my oncologist’s office and the nurse told me that the only thing they look at is WBC, ANC and MONO and that patients should not receive copies of their blood work because they don’t know the significance of anything and they would tell ME when I should be concerned.

23. Frustrated daughter • All I am trying to find out is what the effect on the body of someone having a very low (1,000) platelet count is. My mother has been receiving platelet infusions. • Several messages later - diagnosis of RAEB (Refractory anemia with excess blasts) – trying to make decision to continue treatment – I referred her to social services at her local university, mentioned hospice and sent her information on MDS (Myelodysplastic Syndromes).

24. Good teaching material • RBC 3.69 x 109/L (4.1-5.1) • HCT 24.1% (35-47) • HGB 7.3 g/dL (10.9-15) • MCV 66.2 fL (80-100) • MCHC 30.3 g/dL (33-36) • Fe 2.7mmol/L (6.6-26) • Ferritin 3 µg/L (30-180) • I have been very tired and all I want to do is to eat ice. What do you think my problem is? What is your assessment?

25. A chance to educate patients • My hemoglobin is 14.2 and my ferritin is 13.2 (20-120). How can my ferritin be low when my hemoglobin is good. Don’t they both involve iron in your blood? • My father just had blood work done and his HGB was >20.0. He has lung problems and is a heavy smoker. Can smoking and lung disease affect his hemoglobin?

26. Coag Examples • I take Coumadin and I used to get my PT results in seconds. Now I get an answer called an INR. Is that a new test? Nobody can explain to me what it means – just that it is the way the report is now given. • What are the symptoms of an INR of 8.0?

27. I had been on coumadin for a month without any monitoring. I wanted to get off, so the doctor ordered an INR. It came back 11.1 and he called me at work to come right to his office for a shot of vitamin K. The doctor apologized. Three days after the vitamin K shot, my INR is 1.6. No one told me that I could not take fish oil or that there were any diet restrictions while taking coumadin. Thanks for all your information. Scary, but with a happy ending…

28. This is a foreign language to me • I was found to have an elevated APTT in pre-op screening. I have never had any bleeding problems. I was told that I have a lupus anticoagulant as evidenced by the positive hex phase study, elevated ACAs and inhibitory pattern in multiple factor levels. I was told that because of the lupus anticoagulant that I might be at increased risk of post-op thrombotic episodes. What does all this mean in plain English?

29. FAIRLY EASY What is thrombosis? Why would my physician suggest that I take a baby aspirin every day?? NOT SO EASY My daughter has been diagnosed with Klippel Trenaunay Syndrome. Her doctor wants to start her on Coumadin. How does that relate to KTS? My baby has been diagnosed with Kawasaki Syndrome. Is it usual for the platelet count to approach 1 million? Some questions are fairly easy- and some more complicated

30. Chemistry scope of questions • A recent test indicated my ALT was fine but my AST was 15 (the range being 16-40). What does a lower number mean? Is this dangerous? • What is standard crininine level for a 67 yr. old male? • What is the BCP cholesterol test? • Hi, Can amas test for cancer ? can you do it? thanks

31. A pharmacopeia…and the thick PDR • I am on 1 mg of Primogyna daily…iron tablets, garlic, gelatin capsules, brewers' yeast…Ginko Biloba and Noni…Cozaar…Allegra, Nasonex, and Atrovent. • If taking a c-peptide test how would the drugs Amaryl (glimepiride) & Avandia (Rosiglitazone Maleate) I am taking for diabetes affect the test? • I am taking eltroxin since 1998…. St.Johns Wort…Depakote, mebaral… lipitor

32. What could that possibly be??? O presente texto está na lingua portuguesa (Brasil) e os exames são de minha filha Raquel que apresenta icterícia, cefalopatia, colecistopatia acalculosa e tem 21 anos de idade e gozava de perfeita saúde. Não consome alcool ou outra droga qualquer, exceto um remedio recomendado pela dermatologista de nome Flutamida. Eu ficaria muito grato com suas explicações para os resultados dos exames que transcrevi abaixo: Bilirrubina direta 7,10 mg/dl; Bilirrubina indireta 4,90 mg/dl; Bilirrubina total 12,99 mg/dl Material: sangu; Método: Jendrassik mod. • The test is a HRP test. It's either related to my heart disease or my diabetes. • What is a gamma test? I have results but I don’t know what it is for. Is there a charge for this service, if so please disregard my message, thank you. • My 77-year-old father has been asked to have a "12/60 creatinine" test. http://www.altavista.com

33. Do they really mean that? • What is the significance of elevated nitrates in the urine? • I had a test to determine my blood glucose level since I have type 2 adult onset diabetes… hemoglobin A1c 5.6… I was expecting a reading similar to the blood test results that I get daily on my glucometer. How can I interpret the lab results? Thank you. • I am interesting to know the test for cinetic creatinine concernig to eliminate the cromogenous

34. …you’re thinking of doing what? We are exploring this test in our ED. I am interested in getting information on the technique used to perform the test (I know the sample is placed in a cartridge which is placed in a portable meter—what I don’t know is whether the reading is by mass spectrometry, electrophoresis, or some other technique). Do you have any information? Thanks in advance for any assistance you can provide.

35. Interpreting laboratory jargon • Subject:   Urine cultureWhat does mixed urogenital flora, less than 10,000 colonies/mL effect the test results?

36. Uh Oh! • During an annual exam my docter advised me that I may be infected with chlamydia. I have been completely faithful to my boyfriend of three years, and have never had an issue with previous exams. Could I still have gotton this if my boyfriend has been faithful to me? I have heard that in some cases an STD can go undetected for some time is this true? • I know that Trich is a STD but what causes it exactly?  Also who gets it first a man or a woman?

37. Question: Patient was screened for HepB as part of pregnancy blood testing. No known risk factors. Wife Results Oct/04 HepB-HBsAg positive HepB-HBeAg non reactive HepB-Anti-HBe reactive Given results below were the husband and wife ever exposed to HepB, are they currently infectious (acute/carrier), is further testing required? Wife Retest Results Nov/04 HepA-AB(IgG+IgM) Negative HepB core IgM AB Negative HepBs Antibody <10 Nonimmune Wife Second Retest Nov/04 HepBs Antibody <10 Nonimmune Husbands results Nov/04 Surface Antibody (Anti-HBs) <2.0 Liver Markers Normal Antibody (Anti-HAV) Not detected Questions from physicians What do you think?

38. Hi - I would just like to know what the numbers mean on my negative HIV test results.  My print out is as follows for 4 tests since May 2004. May 2004 AxSym HIV  0.30 HIVNG Jul 2004 AxSym HIV 0.29 HIVNG Oct 2004 AxSym HIV 0.40 HIVNG April 2005 AxSym HIV 0.30 HIVNG Test - AxSYM HIV 1/2 Ag/Ab MEIA What are these numbers (ie. 0.30 etc) and why do they change?  If I am HIV Neg why is there a reading at all? This is very confusing and I asked the nurse at the clinic where I got the results who said “the number is just something to do with the type of test” but to me it seems to be some kind of measurement??? HIV serology

39. Obsessed by HIV • hi ascls,this is me again…there is something i still cant get convinced enough about the blood circulation of the eyes..well, does the blood from the eyes flow thru down the body..? but i just wonder does blood in the capillaries of the eyes flow back to the body..? this question is crucial to me as im afraid hiv virus might get into the eyes as for my past encounter of the semen gettin to my eyes.. • (And then, 7 e-mails later)…i recently had a couple of dust particle from my shoe went into my coke drink…..will i get any hiv disease drinking that lot of dust in the drink or pose any danger to my health?

40. Why me? • I have bugs-yes bugs- in my urine. I noticed in the toilet little things floating & upon closer inspection with magnifying glass there were lots...of them swimming. I went to my doctor who did a urine test, said • I had infection & gave me 30 cephalexin caps. I've taken all of them which has been 10 days but I still see some bugs & lots & lots of eggs in all different stages of development. • I think the bugs I pass now are not alive but why are there still so many eggs & when will they be gone?

41. Immunology • Typical questions include • ANA: My ANA came back positive. the Titer was 1:320 and speckled what does this mean? • RF or RA: I had been tested for RA 6 years ago. I have my medical records and I don't know how to read it. What test would hev been ordered and how is it abbreviated? Also what would the test results look like? Lab test ordered under what heading would I find the info? thanks very much

42. Other Questions • am a 49 y/o female, my lab results are the following: complement component C3.......mg/dl........130.03complement component C4.......mg/dl..........10.71are these within the normal range • Is this (antiphospholipids) the same as anticardiolipin antibodies?

43. Some Questions Are Different... • Can you tell me how many serological celiac tests are done annually in the US? Thank you.

44. And My Personal Favorite Question Can you get pregnant from oral sex?

45. And there are times we’d rather not know… • I am a 17 year old male and i have a 2 inch penis.  I am emailing you to find out will my penis grow any more.  If no, is there some type of medication (that works) and is to increase my penis.  It is kind of embarrising not to have a girlfriend or take a shower at school.

46. Truly legal implications • How does one test for the presence of semen in a sample of womans underware? I have several samples I have collected, but don’t know what to do with them. Please help. Thank you.

47. Unique outside research needed to answer some… • do you think that if doc ock used amylase and starch hydrolysis he could defeat spider man? (listed as a “health care provider”!) …then there’s always back to square one… • what does protective mean on the green level

48. And what do our healthcare colleagues ask? • I am a pharmacist and would like to know what electrolytes testing tells a doctor. Also, is there a web site that would tell tell me what lab testing reveals to a doctor? What is so important about a relation between Sodium and Potassium?

49. And what do our healthcare colleagues ask? • I am a physician. What are the effects/consequences of pancreas removal? • As a nurse, I am curious if you can tell the difference between inherited and acquired osmotic fragility?

50. Time to challenge the clinician! • I am 28 years old from the philippines. I had this bad headache at the back of my head. It‘’s agonizing. for almost a month its attacking once in a while but lately more thank a week now the headache is getting worst. So, i had an ESR test and it say there the normal range is 0-20 but my result is 40. But the doctor ask my age and I said 28 and he added 14 into it that makes it normal he said. so, am not really sure if what he said is correct. so, pls. let me know so they're be light into this matter.