Author: Matt Johnson

Digital Health Symposium at Carolina – Feb 22, 2018

The UNC Health Sciences Library will be hosting the Digital Health Symposium on February 22, 2018 from 8:30am to 2pm. According to the Carolina Digital Health Research Initiative’s (CaDHRI) newsletter (available here), “The theme of the event is “Digital Health Everywhere”, and the symposium will span a wide range of digital health topics. Speakers will include UNC researchers, students, and library staff, as well as representatives from industry, government, and non-profits. Topics will range from app development for different user groups, novel devices for research, ethics in digital health work, and more.” For more information from CaDHRI, visit their website (http://digitalhealth.web.unc.edu/) or follow them on Twitter ().

For anyone (students and faculty) interested in submitting their work as a poster for the conference, the call for posters is open until February 5, 2018 and can be submitted using this google form. To submit, you only need to include an abstract of the poster being submitted, though you can also submit the final poster if you already have on created.

For more information and to register, keep an eye out at http://hsl.lib.unc.edu/dhsymposium

Whether or not you submit your work, you should still save the date for this exciting event!

A Multi-Level Analysis of Barriers to Care: Macro Level (Structural)

I argued in a previous post that public health should look at factors impacting health using a multi-level approach. In this post, I attempt to outline the various multi-level barriers to medical care (specifically access to PrEP, HIV prevention, and AIDS care) for black queer men (or black men who have sex with men). This post focuses on structural barriers, but the micro and meso level analyses are also available.

At the structural level, queer men, especially those who are men of color, poor, disabled, or uneducated,  face stigma, low health literacy, discrimination, incarceration, poverty, and a general lack of access to healthcare all of which impact their ability to gain access to PrEP and other prevention measures and to continue their treatment and care (Levy et al., 2014; Philbin et al., 2016; Rucker et al., 2017; Thomann et al., 2017). Stigma continues to stand out as a huge structural barrier, especially with respect to access to PrEP or anything related to HIV or sexual health. HIV can often still be considered a “gay men’s disease” or something that only slut and whores have to worry about; these notions continue even from the medical institution, which also continues to emphasize the idea of “Truvada Whores”—the idea that queer men take PrEP in order to participate in riskier sexual behaviors rather than to decrease their risk of contracting HIV (Calabrese et al., 2017; Calabrese & Underhill, 2015). Some providers and researchers have gone so far as to recommend PrEP for everyone; however, we must remember to target PrEP to individuals who are at risk of contracting the disease rather than encouraging everyone to take it even if they are incredibly unlikely to contact HIV (Calabrese, Underhill, et al., 2016). Of course, there are heterosexual individuals who are at risk of contracting HIV, who should likely be taking PrEP, though it has primarily been targeted towards gay men (in sometimes insensitive advertisements that increase stigma for the queer community), but there are also people who don’t have enough risk factors to warrant the medication.

Calabrese, S. K., Magnus, M., Mayer, K. H., Krakower, D. S., Eldahan, A. I., Hawkins, L. A. G., . . . Dovidio, J. F. (2017). “Support Your Client at the Space That They’re in”: HIV Pre-Exposure Prophylaxis (PrEP) Prescribers’ Perspectives on PrEP-Related Risk Compensation. AIDS Patient Care STDS, 31(4), 196-204. doi:10.1089/apc.2017.0002

Calabrese, S. K., & Underhill, K. (2015). How Stigma Surrounding the Use of HIV Preexposure Prophylaxis Undermines Prevention and Pleasure: A Call to Destigmatize “Truvada Whores”. Am J Public Health, 105(10), 1960-1964. doi:10.2105/ajph.2015.302816

Calabrese, S. K., Underhill, K., Earnshaw, V. A., Hansen, N. B., Kershaw, T. S., Magnus, M., . . . Dovidio, J. F. (2016). Framing HIV Pre-Exposure Prophylaxis (PrEP) for the General Public: How Inclusive Messaging May Prevent Prejudice from Diminishing Public Support. AIDS Behav, 20(7), 1499-1513. doi:10.1007/s10461-016-1318-9

Levy, M. E., Wilton, L., Phillips, G., Glick, S. N., Kuo, I., Brewer, R. A., . . . Magnus, M. (2014). Understanding Structural Barriers to Accessing HIV Testing and Prevention Services Among Black Men Who Have Sex with Men (BMSM) in the United States. AIDS Behav, 18(5), 972-996. doi:10.1007/s10461-014-0719-x

Philbin, M. M., Parker, C. M., Parker, R. G., Wilson, P. A., Garcia, J., & Hirsch, J. S. (2016). The Promise of Pre-Exposure Prophylaxis for Black Men Who Have Sex with Men: An Ecological Approach to Attitudes, Beliefs, and Barriers. AIDS Patient Care and STDs, 30(6), 282-290. doi:10.1089/apc.2016.0037

Rucker, A. J., Murray, A., Gaul, Z., Sutton, M. Y., & Wilson, P. A. (2017). The role of patient-provider sexual health communication in understanding the uptake of HIV prevention services among Black men who have sex with men. Cult Health Sex, 1-11. doi:10.1080/13691058.2017.1375156

Thomann, M., Grosso, A., Zapata, R., & Chiasson, M. A. (2017). ‘WTF is PrEP?’: attitudes towards pre-exposure prophylaxis among men who have sex with men and transgender women in New York City. Cult Health Sex, 1-15. doi:10.1080/13691058.2017.1380230

A Multi-Level Analysis of Barriers to Care: Meso Level (Interactional & Community)

I argued in a previous post that public health should look at factors impacting health using a multi-level approach. In this post, I attempt to outline the various multi-level barriers to medical care (specifically access to PrEP, HIV prevention, and AIDS care) for black queer men (or black men who have sex with men). This post focuses on the meso or mid-range level of analysis, and an analysis of the micro level is available from last week.

Black queer men especially lack trust in the pharmaceutical industry as well as in providers and the medical institution themselves (Philbin et al., 2016; Rucker et al., 2017; Thomann et al., 2017). This moves into a community level and interactional level issue where the community has many reasons not to trust providers or drug companies. We can think back to previous studies like the Tuskegee experiments, but we can also think about the lack of adequate care for black patients currently, including limited pain management and less patient-centeredness to name a few examples (Hoffman, Trawalter, Axt, & Oliver, 2016). This is a considerable barrier for providers to overcome in order to provide better treatment to black queer men. Similarly, queer men generally face implicit and explicit bias from providers and receive worse care, and this lack of care is exacerbated by other marginalized social positions (Phelan et al, 2014).

These could also be seen as macro level issues at the institutional level because the medical institution and pharmaceutical industry have constructed a practice that is ineffective for many marginalized individuals. Further, this stems from structural issues in our country such as racism, incarceration, and stigma that limit access to health care and impact our institutions.

Hoffman, K. M., Trawalter, S., Axt, J. R., & Oliver, M. N. (2016). Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proc Natl Acad Sci U S A, 113(16), 4296-4301. doi:10.1073/pnas.1516047113

Philbin, M. M., Parker, C. M., Parker, R. G., Wilson, P. A., Garcia, J., & Hirsch, J. S. (2016). The Promise of Pre-Exposure Prophylaxis for Black Men Who Have Sex with Men: An Ecological Approach to Attitudes, Beliefs, and Barriers. AIDS Patient Care and STDs, 30(6), 282-290. doi:10.1089/apc.2016.0037

Rucker, A. J., Murray, A., Gaul, Z., Sutton, M. Y., & Wilson, P. A. (2017). The role of patient-provider sexual health communication in understanding the uptake of HIV prevention services among Black men who have sex with men. Cult Health Sex, 1-11. doi:10.1080/13691058.2017.1375156

Thomann, M., Grosso, A., Zapata, R., & Chiasson, M. A. (2017). ‘WTF is PrEP?’: attitudes towards pre-exposure prophylaxis among men who have sex with men and transgender women in New York City. Cult Health Sex, 1-15. doi:10.1080/13691058.2017.1380230

 

A Multi-Level Analysis of Barriers to Care: Micro Level (Individual)

I argued in a previous post that public health should look at factors impacting health using a multi-level approach. In this post, I attempt to outline the various multi-level barriers to medical care (specifically access to PrEP, HIV prevention, and AIDS care) for black queer men (or black men who have sex with men).

At the individual level (the micro level), queer men are skeptical of medication for healthy individuals and wary of the potential side effects caused by these medications (Philbin et al., 2016). These ideas seem to go hand-in-hand. If you don’t want to take medication as a healthy person, you’d be worried about the potential side effects that would ultimately make a health person sick in order to prevent something that you might or might not contract. In this sense, it might be important to make people recognize the real possibility of contract the disease. We’re treating risk here, but preventing the disease is important. Further, the side effects of PrEP are fairly uncommon.

Queer men might think that this medication would be useful for others but not for them. Here, we have to think about assessing the individual patient to decide whether or not PrEP is right for them (Philbin et al., 2016). We’re not treating someone because they’re black and queer, and black queer men have the highest rates of HIV. It’s obviously possible for black queer men to have low associated risk of HIV. Treating high risk means treating patients with high risk factors not treating everyone from a population that has high rates of the disease. However, this presents an added barrier for providers to convince patients with high risks that this is the right drug for them.

Philbin, M. M., Parker, C. M., Parker, R. G., Wilson, P. A., Garcia, J., & Hirsch, J. S. (2016). The Promise of Pre-Exposure Prophylaxis for Black Men Who Have Sex with Men: An Ecological Approach to Attitudes, Beliefs, and Barriers. AIDS Patient Care and STDs, 30(6), 282-290. doi:10.1089/apc.2016.0037

 

 

What is Information Poverty?

The theory of information poverty was originally introduced by Elfreda Chatman (E.A. Chatman, 1991, 1996, 1999). The definition and use of information poverty has developed since Chatman’s original conception, and several scholars have attempted to trace this lineage (Haider & Bawden, 2007; Yu, 2006, 2011). However, Britz (2004) combines the connectivity, content, and human approaches to information poverty to outline seven important elements of information poverty. Using these elements, he provides the following definition: “Information poverty is that situation in which individuals and communities, within a given context, do not have the requisite skills, abilities or material means to obtain efficient access to information, interpret it and apply it appropriately. It is further characterized by a lack of essential information and a poorly developed information infrastructure” (Britz, 2004, p. 204). Lor and Britz (2010) also remind us to question what it means to have access to knowledge, specifically introducing access as an epistemological dimension that looks at information and knowledge socially and to understanding knowledge as a process, an idea derived from constructivist approaches to education.

For example, Lingel and boyd (2013) approached the extreme body modification community to understand information poverty experienced by its members and to examine the information world. Ultimately, they found that the community itself was highly knowledgeable, but stigma contributed to a security culture and hiding of information from outsiders. Further, Savolainen (2016) proposes six socio-cultural barriers to information seeking, which are “barriers due to language problems, barriers related to social stigma and cultural taboo, small-world related barriers, institutional barriers, organizational barriers, and barriers due to the lack of social and economic capital.”

Britz, J. J. (2004). To Know or not to Know: A Moral Reflection on Information Poverty. Journal of Information Science, 30(3), 192-204. doi:10.1177/0165551504044666

Chatman, E. A. (1991). Life in a Small World: Applicability of Gratification Theory to Information-Seeking Behavior. Journal of the American Society for Information Science (1986-1998), 42(6), 438.

Chatman, E. A. (1996). The Impoverished Life-World of Outsiders. Journal of the American Society for Information Science, 47(3), 193.

Chatman, E. A. (1999). A Theory of Life in the Round. Journal of the American Society for Information Science, 50(3), 207.

Haider, J., & Bawden, D. (2007). Conceptions of “information poverty” in LIS: A discourse analysis. Journal of Documentation, 63(4), 534-557. doi:10.1108/00220410710759002

Lor, P. J., & Britz, J. (2010). To access is not to know: A critical reflection on A2K and the role of libraries with special reference to sub-Saharan Africa. Journal of Information Science, 36(5), 655-667. doi:10.1177/0165551510382071

Savolainen, R. (2016). Approaches to socio-cultural barriers to information seeking. Library & Information Science Research, 38(1), 52-59. doi:10.1016/j.lisr.2016.01.007

Yu, L. (2006). Understanding information inequality: Making sense of the literature of the information and digital divides. Journal of Librarianship and Information Science, 38(4), 229-252. doi:10.1177/0961000606070600

Yu, L. (2011). The divided views of the information and digital divides: A call for integrative theories of information inequality. Journal of Information Science, 37(6), 660-679. doi:10.1177/0165551511426246

Multi-level Models of Health Behavior for HIV

In a post about public health and epistemologies of ignorance, I argued that public health interventions have focused solely on the individual rather than looking at other factors impacting health. Moving forward, we need to develop multi-level models of health behavior, so here are a few examples of a multi-level analysis and multi-level models related to HIV prevention and AIDS care. Kaufman et al (2014) present a multi-level analysis of factors impacting HIV-related behavior and behavior change and review a few recent models for looking at HIV-related health behavior from multiple levels. The transtheoretical and health belief models and the theories of reasoned action and planed behavior have been used repeatedly in public health literature about HIV-related health behaviors, but all of these models and theories focus on the individual rather than looking at the individual as part of a larger system.

Kaufman et al (2014) looked at four multi-level models that expand on the individual models of health behavior to look at a more holistic picture:

  1. The Multiple Domain Model: Zimmerman, R. S., Noar, S. M., Feist-Price, S., Dekthar, O., Cupp, P. K., Anderman, E., & Lock, S. (2007). Longitudinal test of a multiple domain model of adolescent condom use. Journal of Sex Research44(4), 380-394.
  2. The Network-Individual-Resource Model: Johnson, B. T., Redding, C. A., DiClemente, R. J., Mustanski, B. S., Dodge, B., Sheeran, P., … & Carey, M. P. (2010). A network-individual-resource model for HIV prevention. AIDS and Behavior14(2), 204-221.
  3. The Dynamic Social Systems Model: Latkin, C., Weeks, M. R., Glasman, L., Galletly, C., & Albarracin, D. (2010). A dynamic social systems model for considering structural factors in HIV prevention and detection. AIDS and Behavior14(2), 222-238.
  4. The Transmission Reduction Intervention Project: Friedman, S. R., Downing, M. J., Smyrnov, P., Nikolopoulos, G., Schneider, J. A., Livak, B., … & Psichogiou, M. (2014). Socially-integrated transdisciplinary HIV prevention. AIDS and Behavior18(10), 1821-1834.

These are just a few examples of models that look at factors on multiple levels, specifically for HIV. More work should be done to expand and perfect these models, though the move towards multi-level models is certainly a move in the right direction. We should attempt to use a social-ecological framework with thinking about other public health interventions as well.

Kaufman, M. R., Cornish, F., Zimmerman, R. S., & Johnson, B. T. (2014). Health Behavior Change Models for HIV Prevention and AIDS Care: Practical Recommendations for a Multi-Level Approach. Journal of Acquired Immune Deficiency Syndromes (1999)66(Suppl 3), S250–S258. http://doi.org/10.1097/QAI.0000000000000236

Public Health & Epistemologies of Ignorance

The field of public health has primarily thought about improving health by making changes for individuals. We try to get individual people to quit smoking, make dietary changes to combat obesity, and start using condoms or other safer sex practices to limit exposure to sexually transmitted infections (STIs). However, all of these interventions focus only on changes that individual people are supposed to make. They don’t think about barriers that impact an individuals ability to make these changes or other factors that could be affecting, positively or negatively, the health of individuals.

In thinking about public health interventions, we should think about a multi level analysis, including the micro level (individual), the meso level (interactional, community), and the macro level (institutional, structural). Factors at each of these levels can positively and negatively impact health; however, by only looking at the individual (the micro level), we miss a significant portion of the picture in terms of health, especially when we start thinking about health disparities.

Lisa Bowleg (2017) argues that this represents an epistemology of ignorance, specifically that the focus on the individual and on health as a characteristic solely of the individual (a very neoliberal position), “obscure[s] the role of social–structural factors (e.g., political, economic, institutional discrimination) that constrain the health of historically marginalized individuals, communities, and societies” (678). She continues to argue that “[e]pistemologies of ignorance illustrate that willful ignorance is functional (Alcoff, 2007; Mills, 1997, 2007). Neglecting the historical legacy of how race (as well as the other marginalized social positions that intersect with race) has structured social inequality for people of color in the United States serves to center the health experiences of White people as normative, “color blinds” White privilege to highlight positive health outcomes among White people as the product of their individual actions, and reifies negative stereotypes about the “irresponsible” health behaviors of people of color (Bowleg et al., 2017).” From a political perspective, she argues that this focus on the individual in public health, and in other spheres, limits the political imperative and pressure to conduct research and enact laws that would address the social-structural factors in order to alleviate health disparities.

Bowleg, L. (2017). Towards a Critical Health Equity Research Stance: Why Epistemology and Methodology Matter More Than Qualitative Methods. Health Educ Behav, 44(5), 677-684. doi:10.1177/1090198117728760

Implicit Bias in Prescription of PrEP

African American men who have sex with men (MSM) are disproportionately affected by HIV; however, recent research suggests that medical providers are less likely to prescribe Pre-Exposure Prophylaxis (PrEP), a preventative treatment for HIV, to black MSM (Calebrese et al, 2014). This is a direct result of implicit racial bias, prejudice, and a lack of institutional knowledge on the part of medical providers. Current stereotypes about gay men exist among many medical practitioners, specifically with regard to “Truvada Whores.” It is assumed that MSM who take PrEP will participate in more risky behaviors and thus be at greater risk of HIV, though PrEP is an important measure for reducing risk of HIV. This is further exacerbated by implicit racial bias which corroborates beliefs by providers that black MSM are even more likely than white MSM to partake in risky sexual behaviors if they are prescribed PrEP. As such, medical providers are less likely to prescribe PrEP to black MSM, barring them from access to an important and potentially life-saving measure to prevent HIV, a disease that they are disproportionately affected by.

This research suggests that public health interventions that focus on black MSM might be misplacing their efforts by focusing on changing the behaviors of the individuals or encouraging use of PrEP if they don’t have the necessary support from their doctors. Perhaps, public health interventions should focus on developing additional institutional knowledge to prepare medical providers for caring for black MSM and providing adequate sexual health care.

Calabrese, S. K., Earnshaw, V. A., Underhill, K., Hansen, N. B., & Dovidio, J. F. (2014). The Impact of Patient Race on Clinical Decisions Related to Prescribing HIV Pre-Exposure Prophylaxis (PrEP): Assumptions About Sexual Risk Compensation and Implications for Access. AIDS Behav, 18(2), 226-240. doi:10.1007/s10461-013-0675-x

Health Disparity and Health Difference

The difference between health disparities and health differences lies in inequity and injustice. We might see differences in mobility between elderly individuals and teenagers as a normal difference in age, not related to ageism, though certainly elderly individuals face issues of ageism. However, differences in mortality rates between people of different social classes can be directly related to social and economic inequity. Hence, a health disparity is a health difference that results from inequity and injustice.

Returning to my example of HIV, PrEP, and queer men, we know that queer men have been identified as a high risk group for HIV, which is why targeting PrEP and other interventions at queer men is so important for public health interventions and control of the epidemic. However, we also know that HIV/AIDS was originally considered to be a “gay disease” and limited action was taken at the original outbreak because of the social undesirable position of queer men. This social inequity based on sexuality was stronger at the outbreak of AIDS, but it still persists today. The combination of HIV stigma, poor sexual health education (for everyone, but also specifically for queer individuals), and lacking health care for queer individuals (health care providers are uncomfortable asking about sexual history, don’t ask about sexuality, don’t take necessary precautions, aren’t aware of health needs of queer individuals, etc) directly results in a health disparity resulting in higher rates of HIV among queer men, especially black queer men.

However, public health interventions that continue to target queer men for behavior change seem to push the blame of this health disparity and social inequity on those facing inequity, rather than targeting the providers who are unprepared and improperly educated to effectively care for queer men. We know that providers are less likely to prescribed PrEP to black queer men, compounding on social inequity based on sexuality to add race. This stems directly from racial and gender stereotypes that influence providers and limit their ability to appropriately care for black queer men (Calebrese et al, 2014; 2017). Nonetheless, public health interventions exacerbate the disparity by focusing on queer men adopting different health behaviors instead of educating health care providers and sexual health educators to provide better care for queer men. The root is structural, rather than individual, and ignoring the structural inequity continues to harm queer men, especially black queer men.

PrEP for Life

Reflecting on the models of health discussed previously (part 1 & part 2), a queer man without human immunodeficiency virus (HIV; disregarding other illnesses) would be healthy, whereas a queer man with HIV would be unhealthy within the medical model of health. In the sociocultural model of health, both a queer man with HIV and without HIV would likely be considered healthy. Given current treatments, there would likely be no affect on an individual’s ability to perform the five activities of daily living. Finally, in the psychological model, we have no easy way to estimate beforehand.

However, within the “drugs for life” model, since queer men are identified within the public health discourse as high risk for HIV, they are immediately seen as bodies-at-risk. Within this model, being queer men can become a predisease for HIV. Much like pre-hypertension for hypertension, the predisease becomes an illness to be treated in itself. Here, we treat the predisease with public health interventions, but the predisease is the behavior of men having sex with men. However, with the best intentions, public health interventions and health communications campaigns can exacerbate the stigma within the queer community with regards to HIV and pre-exposure prophylaxis (PrEP).

Within this model, PrEP becomes another “drug for life.” There’s no point at which individuals can stop taking PrEP to prevent HIV. It has to be consistently taken in the same way that one would consistently take drugs after contracting HIV. Hence, the treatment for the disease and the treatment to prevent the disease have the same consequences. Presumably, patients would only stop taking PrEP after finding a long-term partner with whom they are monogamous (also presumably both partners would be HIV negative). However, this assumes compulsory monogamy and perhaps even compulsory matrimony. For queer men who don’t want to become monogomous or get married or who are worried about their partner’s (or partners’) infidelity might still be taking PrEP. This combination of high NNT (especially high NNT when we consider the effectiveness of condoms, which should still be used while taking PrEP, since it isn’t 100% effective) with the endless length of the prescription results in considerable profits for drug companies and a significant economic injustice for queer men.