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a case for incremental risk communication in SNP-based, common-chronic disease risk

oi, life has been busy indeed. as i delay my packing for the American College of Medical Genetics meeting in Albuquerque yet another hour past midnight, here is something i have been working on that has been particularly interesting to me: risk communication in public health. as of my public health courses, i of course bring in my knowledge and interests around genetic testing and emerging genetic technologies into play. here is a sample of a short piece i wrote discussing the idea of emphasizing incremental risk…

Incremental Risk Communication and Common Genetic Variant Risks

The framing of numerical risk comparisons as incremental values when compared to showing risk figures as simply a comparison of absolutes risks has been show to better focus the target audience’s attention on specifically the change from baseline risk (Zikmund-Fisher B, Fagerlin A, Roberts A, Derry H, et al 2008). In the context of genetic risk communication and genetic counseling for many highly-penetrant and/or mendelian-inherited disorders, the risk of developing symptoms and risk of inheritance, respectively, garner considerably less utility in highlighting incremental risks given the often extreme differences that exist in these risks when compared to the general population. In stark contrast are those risks conferred to individuals when common genetic variants, such as those ascertained through many recent genome-wide association studies imparting minimal to modest risks, many with a relative risk under 2 (Eng C and Sharp R,  2010). Among a slew of complex ethical, legal, and social issues surrounding the reliability and clinical utility of communicating these common variant risk modifications to the public, an underlying methodological issue has been how a genetic counselor can actually communicate such small relative risk figures without misrepresenting the actual changes in baseline risks and increase in risk due to a variant. A potential solution lies in the communication of incremental risks in the methods that the authors of Zikmund-Fisher et al. 2008 demonstrate, focusing on comparison of baseline, absolute risks and the incremental changes attributed to presence of a common genetic variant.

In order to properly frame the utility of incremental risk in this scenario,  a hypothetical discussion of an individual with a baseline heart disease risk of 14%, and a testable, validated common genetic variant will exist, with an relative risk of 1.3 affecting heart disease in individuals of this population, will be presented. One technique normally found in the genetic counselor’s repertoire in risk communication has been to state baseline risks, and then to provide the odds ratio of possessing the common variant in multiple formats. These multiple relative risk formats could be framed as “1.3 times greater chance of heart disease”, shown that the variant provides “30% more risk”, or provided as the absolute risk of an individual with the common variant to be 18.2% for heart disease. None of these techniques, however, highlight the “marginal increment in risk while simultaneously providing information about baseline risk level for context” (Zikmund-Fisher et al. 2008).  Instead, framing the change in risk of an individual that possesses our proposed common variant through incremental risk, may highlight the change in risk more accurately without the need for more high numeracy-requiring processes of mental math: multiplying relative risks against baseline or subtracting absolute final risks from baseline.

In this scenario of highlighting incremental risk, the communicated risks would thus be provided as a baseline, absolute risk for heart disease of 14%, while individuals possessing the common variant experience an incremental absolute increase of 4.2% risk for heart disease, providing a total of 18.2% absolute risk. While the authors of Zikmund-Fisher et al. 2008 acknowledge that providing incremental risk altered the degree of worry in participants, without knowing what the appropriate degree of worry should be among these individuals, the focus on the specific change in absolute risk more accurately distinguishes for audiences the most important element of the risk communication.

Cited:

Eng C, Sharp RR. Bioethical and Clinical Dilemmas of Direct-to-Consumer Personal Genomic Testing: The Problem of Misattributed Equivalence. Sci Transl. Med. 2010: 2, 17cm5 .

Zikmund-Fisher BJ, Fagerlin A, Roberts TR, Derry HA, Ubel PA. Alternate methods of framing information about medication side effects: Incremental risk versus total risk of occurrence. Journal of Health Communication 2008;13(2):107-24.

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health communications resources – part 1

Sometimes I forget what I like using as references for my work and what I prefer referring to for advice when I’m in a bind, doing health education/communications work, and what I don’t, but here are some resources for those of you who may or may not be in the Health Education field but still need to make materials that you’re hoping someone other than yourself or your superiors will understand. (Correct, that sentence was not meant to be readable).

But what are health communications?

The National Cancer Institute and the Centers for Disease Control and Prevention define Health Communications as:

The study and use of communication strategies to inform and influence individual and community decisions that enhance health.

Read about it, and get some more info about some specific CDC prevention campaigns, as well as a bigger list of resources than I’d ever be able to give you at:

http://www.cdcnpin.com/scripts/campaign/strategy.asp

But today I have a few comments about a quick place to start: online are many government-sponsored booklets (they after all, have been doing this stuff for years).

The CDC has an aptly named booklet called Simply Put. Provides very appropriate instructions and examples on how you might write, organize, and modify text to make it more accessible to diverse populations. Includes readability scoring instructions at the end too! The PDF may be 48 pages long, but hey, the majority of them are blank pages and tons of white space (good for readability!)

Simply Put – http://www.cdc.gov/od/oc/simpput.pdf

National Cancer Institute (NCI) has the Pink Book (Making Health Communication Programs Work), which I’d never heard of (although I think it may have been mentioned in my courses and I just didn’t know what it meant, and promptly forgot). It quite literally is a pink book, if you have an older print version. This book has been out for years and years and is certainly one of the standard references of people in this field, but NCI no longer publishes these in print, but the materials are updated and available online and in PDF format as well. All very searchable.

The book walks an individual through the stages of the health communication process: from planning, to developing, to implementation, to assessment – with examples galore and updated methods (internet included!). Solid, solid solid. It’s amazing why this isn’t required reading in our HBHE classes – breaks a lot of the steps down.

One pitfall, however, is that it is a much less theory-oriented than my PH studies – which is perhaps why we didn’t use this. It truly is a manual: step-by-steps that are clear and specific to the particular situation at hand.

Making Health Communication Programs Work – http://www.cancer.gov/pinkbook

That’s all for now… updates as soon as I remember them 😉

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my research is taking the unfortunate turn away from an asian-american focus and looking more broadly at racially/ethnically diverse populations. okay, maybe that’s not unfortunate, but not what i’d initially envisioned at least. most importantly, i’m trying to decipher what the cultural and personal values are that influence the racial/ethnic disparities that we see in prenatal screening and testing uptake. but in designing this study, it really looks more at more broadly, what these values are, and how they influence a woman’s perceived severity of prenatal screening outcomes (the conditions that are screened for). rarely have the women themselves been asked “hey, what do you want screened on prenatal screening if it were your decision, how good/bad of an outcome would you consider those things, and would you consider screening or terminating over it?”. that’s the general gist. asking the client/patient themselves, what do they see as valuable Read more…

A look at our Active Minds Print Campaign Materials

April 28, 2009 1 comment

Finally finished with the Active Minds project! Here’s a look at what we spent a lot of our time working on, and it’s definitely amazing, the printed products will be produced soon and then sent away to Active Minds to officially distribute! My group members and I are really proud of this and, if I must say so myself, the set looks pretty damn good. Check it out:

lookbook001 Read more…

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so i learned today that i was included in the graduating class’ picture postcard/brunch invite. they have my name down with (honorary) next to it… the rationale was that there weren’t any pictures without me in it. haha. interesting. i don’t know though, the pic is maybe a little weird cause i’m pretty front and center with a scarf but just a tshirt. weird. everyone and their mother and their father and their extended family will think i’m weird.

on another note, seminar’s over!

presentation of my survey project in the survey class was really great. it was nice finally being able to talk about some concrete things in class for once, and it was certainly encouraging that people found it interesting. here’s an image of what part the final survey looked like (including the language i used to describe DS, PS, and prenatal testing)

aapiquestionnaireclip

on this same topic, had a meeting with my first research mentor (peds MD, interested in screening). and i have to say it was very very very good. she was extremely excited for my work and i think our personalities mesh very well, and she had some amazing ideas, letting me step back from what i was doing and see the bigger picture, and see where the direction i really was trying to get at but couldn’t articulate. i think i may be going much more hypothetical with my research than the direction i’ve been going with the AAPI, but it’ll certainly be an important thing to consider. i meet with another potential mentor tomorrow (OB/GYN with an MPH?, never met her before), but hopefully she’ll get excited too! and then i’ll have a real research project and can finally get my grade for research skills from last winter. ha.

so the big news today is really that i finally finished up the big project for my genetics and health bx/health ed class today! i initially wanted to create a patient brochure/slideshow/video of the intricacies and patient concerns regarding SEQureDX and the level of research and levels of detection that the technology can provide. however, i felt a little left out when i couldn’t go to ACMG this year in tampa to really hear from Sequenom how exactly the technology works…

SO, ever since i had the cultural competence class in my materials/methods class in HBHE, i’ve been wanting to develop a new model/tool/activity for addressing cultural “competence” training that we get as GC students. well, i did it! and i incorporated a lot of the techniques i was learning from the public health end of things, including some very participatory research based techniques, to help address the lack of introspection and personal evaluation that was missing from traditional cultural “competence” trainings. again, really working toward cultural humility rather than competence. well, that assignment got turned in for the class, but i also forwarded it to my materials/methods professor to get her opinions as to its feasibility as well as my program director who knew a bit about it already. really, honestly, two birds with one stone.

so tomorrow, i’ll be finishing up with my group for materials/methods our print education tool that we’ve been developing all semester for Active Minds. we’ll have the final product hopefully finalized (postcards, posters, and bookmarks) to start a print campaign for this nonprofit org. that’s never had a print campaign. it’s really exciting, there’s nearly 200 chapters where thes items will get distributed.

ah! in the final few days!

Finished with Student Seminar!

wow i’m really glad this is over. everything back in feb. that was causing me grief, then got postponed, then was causing me stress in recent weeks was this assignment in its singularity! here are a few bits and pieces of what i talked about. no i don’t want to explain it any more.

mtdnaseminarfront Read more…

check-in

a lot has happened in the two months that i’ve abandoned this.

it really is amazing how serendipitously things in life happen. the hawaii internship turned out.. well, it didn’t, but after a lot of negotiating, i am now working with the equivalent group in california (yay for the bay area and home), working with their newborn screening branch. very very health education oriented which is even better for me since throughout this semester, i’ve really managed to focus my public health interests on the topics of both creating educational materials related to genetics and training professionals to increase their familiarity with genetics/cultural issues in the clinical setting that affects genetic counseling/etc. in addition to this internship, which you’ll hear all about throughout the summer if i remember to update, i’ll be rotating in the pediatric (+ metabolic?) genetics clinic here for four weeks at the beginning of august, two weeks of which will be supervised only by the medical geneticists that attend the clinic, since the supervising genetic counselor will be away on vacation. that’ll be an immense amount of responsibility, but everyone believes i can do it so i do too! this route (as compared to hawaii) has really allowed me to gain leverage and dictate exactly what i want out of my summer, which has really turned out in my favor. apparently i suck at phone interviews.

on the topic of my research. the survey class turned out well. i ended up creating my survey project on the topic of asian american women and their cultural influences on prenatal msAFP screening decisions, as specifically related to their attitudes/behavioral beliefs about outcomes from screening and their perceived behavioral control. the questionnaire, while yes, haphazardly put together since there’s not very good research and good survey instruments to use, was an interesting process and the process definitely was what was important for me to understand. i present it to the class tomorrow.

however, having gone through this survey, i’m starting to think i want to take a more qualitative approach to my actual GC research project, and focus on acculturation issues in general on the influence of msAFP screening, not just in asian-americans. having to decide how i was going to get a patient population was really difficult and required a lot of “pretending” on the respondent’s part, which as i’ve been learning, is tough to do because the attitudes are so subjective and dependent upon the situation. also, it’s hard to find a good cohort of age-appropriate female asian-americans here at the university of michigan (only 700 female asian american graduate students are here, which is limiting in and of itself, since a lot of them have very very specific backgrounds). i meet with several of my potential research mentors this week and next.

the MI class was great, ended today, and learned a lot of skills and really can see its applicability to genetic counseling. my final presentation can be glimpsed at below. the discrete skills will really be useful in my clinical work later on.

finally turned in the program proposal for the food desert issue in highland park as well. let’s just say that was painful and unnecessarily misguided.

which leaves me to my final major task for the semester: finishing up the mtDNA student seminar that was supposed to be presented in february but never managed to make it to completeion….