Health Literacy and Patient Empowerment

Those concerned with health literacy hold the conviction that there is a standard of health-related knowledge that individuals must be familiar with in order to make lifestyle and medical decisions and govern their lives with intention. Inadequate health literacy has serious consequences in rates of individuals seeking care, ease of diagnosis, adherence to treatment, and health outcomes. In this way, health literacy itself functions as an unequally distributed medical resource. Yet most troubling is that poor health literacy can transform the healing processes that take place in hospitals into demeaning experiences in which desperate patients must surrender control over their bodies.

In Improvising Medicine, Julie Livingston writes that patients arriving at Botswana’s Princess Marina Hospital may not know the difference between diagnostic and therapeutic procedures, the purpose of the blood tests and biopsies being done to them, and even what exactly is the mass growing inside them that is threatening their lives. Despite the fact that a patient’s lack of understanding of his or her illness makes treating and helping the patient more difficult, doctors often do not answer patients’ questions. For instance, Dr. P., the sole oncologist at PHM who sees between 25 and 40 patients per day, usually does not have time to talk with patients much past laying out treatment plans and giving instructions (Livingston).

This lack of respect for patients’ understanding of their illnesses seems foreign to many Westerners who are accustomed to the privilege of doctor visits concluding with responses to laundry lists of questions and worries. But doctor-patient interactions in Botswana, which were born out of colonial and missionary medicine, are defined by a very different and stark power imbalance. Livingston writes,

The etiquette of the clinical encounter in Botswana…  has long been based on a top-down model. Patients do not expect to ask many questions…  while some patients were content to leave expert knowledge to the doctor, many others expressed a pent-up desire for biomedical knowledge, knowledge that might give more precise shape to their existential and phenomenological concerns. (76)

Further, the obvious gravity and urgency of cancer leads patients to feel understandable desperation, which strips them of even more of their authority over decisions regarding their body.

Another troubling consequence of poor health literacy and patients’ being forced to trust their doctors blindly is that doctors cannot be held accountable for their decisions. Because of strict TB treatment protocol in Carabayllo, Peru, Farmer recounts how poor individuals are frequently treated with drugs to which their strain of TB has already shown resistance (237). Of course, it is the health authorities and policies that are at fault for this ineffective and dangerous occurrence, but one must question whether an upper-class citizen of Carabayllo with a full understanding of drug resistance and treatment options could ever be manipulated and abused in this way. Health literacy gives individuals a voice and allows them to advocate for themselves.

Increased health literacy in impoverished communities could lead patients to develop heightened awareness of the substandard care they are receiving. The more that an individual understands about his or her condition and the treatment he or she should receive, the more aware an individual will be when treatment doesn’t proceed as it should (because of interrupted supply of medicine, lack of technologies, physician neglect, etc.). There is a moment in Monique and the Mango Rains when Kris Holloway notes, “I had noticed that the villagers loved shots. To many of them, shots represent the pinnacle of Western medicine, and Western medicine is good” (7). The ignorance behind the idea that shots are the pinnacle of Western medicine reveals how much medical technology the villagers don’t realize that they don’t have. While one could argue this ignorance is benign, our accepting this ignorance serves to validate the horribly damaging and dehumanizing conception that Africans are somehow ‘living in the past.’

Health literacy can be transformative when it empowers individuals to appreciate their rights regarding health and spread their knowledge. We see in Monique and the Mango Rains that Monique visits neighboring towns to teach women how to prevent diarrhea through basic sanitation and how to treat diarrhea with rehydration drinks (Holloway 56). In addition, a 15-year old named Emelin spoke to the U.N. earlier this year about the health issues that girls in her rural Guatemalan community face such as early pregnancy and gender-based violence. Emelin said, “We [adolescent girls] have a voice and we are going to use it” (Cole).

While putting the burden of reducing health inequalities on the shoulders of the oppressed is unjust and unproductive, it is important to acknowledge that improved health literacy does give oppressed individuals the ability to become catalysts for social change. Health literacy unites individuals over commitment to health and inspires communities to advocate collectively for their health needs.

 

Discussion Questions:

  1. What responsibility, if any, do you think physicians have to ensure that their patients understand and are comfortable with courses of treatment? Is this responsibility greater in a place like Botswana where there exists a very tangible power imbalance between doctor and patient? Considering the dilemmas of language barriers and busy schedules, how much should we expect of doctors?
  2. Outside of the doctor-patient interaction, how can health literacy promotion be incorporated into global health initiatives? What are the important aspects of effective health education programs (such as cultural sensitivity)?
  3. Can health literacy empower patients to advocate for their health needs and even become catalysts for social change in their communities?

Course Readings:

Farmer, Paul. Infections and Inequalities: The Modern Plagues. Berkeley: U of California, 1999. Print.

Holloway, Kris. Monique and the Mango Rains: Two Years With a Midwife in Mali. Ed. John Bidwell. Long Grove: Waveland, 2007. Print.

Livingston, Julie. Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic. Durham: Duke UP, 2012. Print.

External Sources:

Cole, Diane. “Meet The 15-Year-Old From Rural Guatemala Who Addressed The U.N.” NPR, 12 Mar. 2015. Web. <http://www.npr.org/sections/goatsandsoda/2015/03/12/392174520/meet-the-15-year-old-from-rural-guatemala-who-addressed-the-u-n>.

Kanj, Mayagah, and Wayne Mitic. “Health Literacy.” Health Promotion Conferences. WHO, 26 Oct. 2009. Web. 2 Oct. 2015. <http://www.who.int/healthpromotion/conferences/7gchp/Track1_Inner.pdf>.

 

22 thoughts on “Health Literacy and Patient Empowerment”

  1. Hey Mira,

    I like how you addressed health literacy in the context of inequalities in medicine – knowledge in biomedicine really does help to ensure that a patient gets the best quality treatment for his/her specific disease.

    Perhaps this is because I’ve grown up in America, but I expect physicians to explain to the patient what the disease is, how the treatment(s) will work, and the prognosis of the patient. I expect physicians to answer questions from the patient and make sure that the patient understands the disease/illness, and if the doctor is too busy, I expect the nurse practitioner or physician’s assistant to give the explanations. I think the doctor and nurses have the responsibility of providing opportunities to improve health literacy in low-income countries, no matter how busy their schedules may be. The doctor and medical professionals working alongside the doctor have direct contact with each patient and have developed a relationship with each patient – the patient trusts the doctor to make the best decisions and provide the best treatment possible, and the doctor is morally obligated to do the best he/she can to alleviate the patient’s discomfort due to illness if cure is not an option.

    Speaking with my parents, however, I was surprised to learn that in Japan (where my father practiced medicine before moving to the states), it is very common for doctors to avoid telling the patient about his/her impending death, especially in the case of chronic diseases such as cancer. Therefore, I was again shocked when the same situation was described in Livingston’s book, in which the doctor told the relatives of the patient that the patient was going to die, but avoided confronting the patient because “direct language about death…could cause patients to ‘give up’ and die earlier…” (Livingston, 165). Although this makes sense, I believe the patient should know whether or not they are expected to live much longer, as there may be certain last words that the patient wants to say, relatives or friends he/she wants to see once more, or last things he/she wants to experience.

    I think health literacy initiatives should incorporate the empowerment of patients so that they can help other patients to become knowledgeable about health-related topics, thereby being a catalyst for social change. Social change seems to work best when it begins with a subgroup of people within the group in which they are trying to create change. In regards to who would initiate such programs, I am unsure – would it be NGOs, volunteers from non-profit organizations, or UN organizations such as WHO? As you mentioned, cultural sensitivity would be a major part of such programs, since without respect for the culture of the community/country, the programs would fall apart and their effects would not last long. It would also be important to consider how to present the educational material on health and what populations to target (e.g., children with infectious diseases, adults with chronic diseases, communities in general).

  2. Hi Mira,
    Your blog is very interesting and presents a serious situation that deserves more recognition, thought, and action. You provide a couple of personal stories from the readings that truly serve as an example of the severity of the situation at hand.
    To answer your first question, I think that physicians have a huge responsibility in providing patients with adequate care, and informing them with simple education of sanitary and health needs, as well as informing them of the severity of their own diagnosis. However, there are not nearly enough physicians as needed to execute this responsibility to its fullest extent. I believe that the responsibilities that physicians have in such countries as Botswana, are much higher and more demanding than the physicians can truly work with. Taking into consideration language barriers and busy schedules, I think the main job for these doctors and physicians is to diagnose and inform the patients of their illnesses, as well as offer and provide treatments needed. On top of this, depending on the individual case, I think it is important that doctors recommend a follow-up visit to keep track of the patient and make any adjustments to the treatments that are necessary.
    To answer your second question, I think it is very important to promote health literacy. I think it is essential for people of these developing countries to have a basic education of sanitary needs, as well as an education on their own, individual health. However, in promoting this, it is important to understand the cultural context in which one is educating. For example, for those educating the women of Botswana, it is important for an educator to understand what resources are offered in these countries, as well as understanding the role that these women have in their own culture.
    To answer your third question, I do believe that health literacy can empower patients to advocate for their rights and health needs. As long as patients in these countries understand what they are going through, they can advocate for change and better conditions.
    In conclusion, I believe it is extremely important that people of developing countries be informed and educated on health. This is important in their own diagnosis, as well as preventing illnesses from occurring or spreading.

  3. Hello Mira,

    I completely agree with your framing of health literacy as a form of privilege—in many ways, biomedical knowledge constitutes a type cultural capital in health care. That is, as you pointed out, those patients with a deeper understanding of the illnesses they have and the treatments offered to them are benefitted (as they are more in control of their quality of care) and, at the same time, patients who lack this knowledge are disadvantaged.

    I share many of the same thoughts as Yuki. It almost goes without saying that most patients have a baseline level of agency in the US when they consult their doctors with regard to their care. Part of this, I believe, can be contributed to the accessibility of online materials and the ease of doing self-diagnostic research, which empower a patient to ask questions and demand answers about their conditions and the methods that their primary care providers use in delivering treatment. Still, the emphasis of this doctor-patient relationship is something clearly lacking in certain parts of the world (as evidenced by Livingston in Improvising Medicine), let alone patient-driven care and the agency of the care recipient.

    I saw firsthand the stark inequalities in health care just this last summer when I spent four weeks at Zhejiang University School of Medicine in Hangzhou, China. The university hospital, though ranking as the top-rated hospital in China according to the physicians that I accompanied, had a maximum consultation time of about five minutes per patient. Even though is partly attributed to the shortage of doctors per patient at the hospital, the reason this rapid consultation turnover is possible is because the hospital administration capitalizes on the inability and (often fear) of patients and families to seek answers about certain conditions (which, again, stems from a lack of health literacy).

    In response to your discussion questions, in an ideal setting, I think physicians have every responsibility to make their patients cognizant of the type of care they are receiving and the need for that care. Granted, while this should certainly not be in the form of “[blunt] and [abstract] statistically based temporal prognostication” (Livingston 166), a doctor’s ability to deliver care is not just measured by his/her experience in providing treatment but also in his/her capacity to involve patients through their medical process and to keep them at ease. Earlier, I noted that this would only be possible in an ideal setting, and so I question the practicality of this solution in Botswana (where there remains a staggering power dynamic between doctors and patients).

    Global health initiatives can promote health literacy to some extent by funding awareness campaigns that engage patients at the population level. Still, these programs should consider the importance of accurate translation and the cultural attitudes of groups toward disease, seeking care, and Western medicine.

  4. Hi Mira,
    I very much enjoyed reading your blog, as your argument was interesting and valuable. Inadequate health literacy works to exacerbate already existing health inequalities and can have detrimental effects on a person’s ability to seek or receive the best quality of care available in his/her situation.

    Physicians and nurses have a great responsibility in ensuring that their patients understand and are willing to accept courses of treatment. This is something that is expected in the United States, and this standard should vary from country to country. However, I can understand why it might. As Julianne commented, there is definitely a shortage of physicians in countries like Botswana; the physicians are therefore faced with a moral dilemma of whether to treat as many people as possible or to spend more time with a limited number of patients. I think that most, like Dr. P at PMH, choose to do the former. I don’t think this stems from a lack of respect for the patient and/or his/her understanding of what is going on – rather, it stems from the fact that there are not enough resources and not enough time to discuss individual situations and treatment plans. However, I think that in a context such as the PMH ward, health literacy is even more important in order to avoid patients/their families making uninformed decisions. For example, in Improvising Medicine, a concerned family refuses to let their son’s leg be amputated; when they finally decide to pursue the operation, it is much too late. In this case, Dr. P denounces the family for going against his orders and somewhat blames them for making him lose another patient. Although I can understand his frustration – he is the doctor and expects his patients to be compliant if they want help – I think that increasing health literacy would have helped the family be more knowledgeable about why the amputation was necessary as a preventative measure. One of the main problems in the case of the PMH ward, therefore, is the lack of staffing; increasing the number of local healthcare professionals would help to increase the distribution of health literacy. I stress the word “local” because of the fact that language barriers, as you note, do exist. Because of these barriers, people who can properly explain treatment plans, or people who can train others to properly explain treatment plans, are necessary in the healthcare setting.

    Regarding your second and third questions, I think that health literacy promotion must be culturally and contextually sensitive for it to empower patients to advocate for their health needs. Yes, education is power. But education has to be practical and relevant to specific societies and the resources that they have. We see this practicality in the Monique and Mango Rains example you cited; Monique doesn’t advocate use of Pepto-Bismol (or other antidiarrheal medicines that would be harder to access in Botswana) but rather teaches women basic sanitation and basic treatments. This is not to say that education should be full of holes or held back but to emphasize the need for spreading utilizable information.

    1. I made a typo in my second paragraph. I meant: “This is something that is expected in the United States, and this standard should NOT vary from country to country. “

  5. Hi Mira,

    Health literacy is made a vital component of equality in your blog, and I think it is so important that you called to attention the fact that patients who lack this knowledge lose control of their bodies and senses of agency. Here in the United States, we do put doctors and physicians somewhat on a pedestal, and are told that they know best, and I feel as though this is no different in most countries around the world. As you mentioned, Kris Holloway in Monique and the Mango Rains acknowledges that many of the women she worked with saw western medicine itself as good without question. However, I fully agree that withholding information and not informing patients about the medical technology that is available makes it seem like they are somewhat below us, or as you said, “living in the past”. This is no way to view the situation if we want to actually create change and help people globally.

    I believe physicians and hospitals have the full responsibility of informing patients, as well as their families, about the condition of the patient and the details of their treatment. Though it is true that a busy schedule and barrier such as culture and/or language will make it considerably more difficult, I feel as though a type of connection and trust is essential–especially when one person is putting their lives in another person’s hands. If a physician knows they will be working in a country with a language barrier, they should learn about the language and culture as a part of their training so that they can best help the people where they are planning to work. When choosing to help people, in any respect, there should be full commitment, and when choosing between quality and quantity, the people who received help should feel like they were given the best care and attention possible.

    Similar to Yuki and Sachit, growing up in the U.S. has lead me to believe that there is something wrong if a physician is not explaining a patient’s condition or treatment well or is not following up on their patient. Sachit pulls in the point about the Internet and access to information, and the technology in our country certainly has a tremendous impact on the fact that our own individual research allows us to ask questions. In countries without these resources, patients may not get answers from their physicians, but equally as concerning, they may not have enough information to even ask essential questions about their own health. Education and knowledge are powers that can spread, and having patients know about what is happening can definitely lead them to becoming catalysts for their entire community. Attacking the issue through individual patients as well as through larger health education programs may be the most effective and efficient way to reinforce the idea of health literacy.

  6. Hi Mira,

    I agree with Thu on your first question, I think that in order to maximize patient care in global heath projects or in hospital settings, the doctors coming from western countries (the US or Europe) that we have come across (Paul Farmer, Dr. P) should come into the country they are going to practice with prior knowledge of the country, its culture, history and language to best perform their job. I understand that the schooling required to become a doctor is already taxing enough but background knowledge of the prominent religion, social/political structure and being semi-fluent in the community’s language could make a major difference in the communication between doctor and patient, the comfortability of both parties, and in the outcome of patient care.

    Additionally having the nurses as aware of the people, country, and culture is just as important too. I think this factor adds to the success of the clinics established in Haiti by PIH–the nurses and community health care workers are Haitian so they are knowledgable of the people and region. One could also argue that they are more dedicated the health of the people from their country and less likely to have instances cited by Livingston, “Some of the medical officers were so burned out from the grueling nature of their work that they would sometimes fail to show up for work, arrive late, or call in sick” (64). But that’s not to say that the workers at PMH are not dedicated or that community healthcare workers in Haiti don’t get overwhelmed, I’m sure there are instances of both too.

    Outside of the patient-doctor relationship global health care projects could incorporate a program for patients to learn more about their diseases and treatment, through pamphlets, books, or support groups . This will take some stress off the doctor for providing all of the medical they knowledge they need to understand what is going on in their bodies while also allowing them to independently acquire knowledge and achieve, what you ask in question three, the health literacy to empower patients and allow them to advocate for their health needs and subsequently become catalysts for social change in their communities.

  7. Hi Mira!
    I think your argument about health literacy being a patient right is a basic principle not many people in the US think about. Here, as many people have mentioned, patients expect to have their condition and prognosis explained by their doctor or nurse. This right, however, does not exist around this world, causing people to not be able to choose how they govern their lives and treatment.

    As you have mentioned, in countries like Botswana, there is an imbalance of medical knowledge between the patient and the doctor. I do think it is the responsibility of someone with medical knowledge to inform the patient what their disease is, what treatment they are receiving and why, and what their prognosis is. However, I have grown up in the US, where I was groomed to expect this from a very young age. There could be some good in not telling a patient of their impending death, so that they are able to live out their last days more fully. This is not an excuse to ignore patients questions though, as I do believe that ever patient has a right to knowledge about what is happening in their body. That being said, how does this play out in a context where there aren’t enough doctors and health care workers to even administer the basic treatments needed? Maybe this is something Peace Corps workers could do that would actually make an impact on the local people. The volunteers though would have to become culturally knowledgeable about the area and the lives of the local people in order to do this effectively.

    This idea of cultural knowledge when trying to educate citizens is very important and gets into what question 2 is asking. If an outside worker tries to use US-based medical knowledge, it will likely not fit the context of another country. Biomedical responses to health problems are different around the globe, such as the women in Japan who experience menopause vastly different than those in the US. That being said, if there were a way to educate and train more local leaders to implement health education programs, this could be very useful. A collaborative effort to bring health literacy in a cultural context is what is likely needed to bring about global health initiatives on effective health education.

    In reading this, I questioned whether in the US we might have too much health literacy sometimes. It’s the same dichotomy between have too much medical equipment in the US and choosing not to use it and not having basic medical equipment in less developed countries. The internet has let people to try to diagnose themselves without a doctor or medical equipment. What effect does this have on a patient’s care and doctors’ credibility? Is being too health literate a problem or beneficial to individuals in a society; is it even something that can be talked about as existing?

  8. Hi Mira,

    I really enjoyed your blog post; it was very informative and insightful. Health literacy is such an important and underemphasized topic, and I agree with you when you say that it can cause health inequalities. As you mentioned, Health literacy plays a big role in patient understanding of what procedures are being performed on them, and this lack of knowledge can cause a discontinuation or misuse of treatments.

    Regarding your first question, I think that physicians and other health workers play a crucial role to ensure that patients understand and are comfortable with the course of their treatment. Similarly to what many of our classmates said, because I grew up in a society where doctors or nurses try to make you understand your treatment and diagnosis as precisely as possible, it is a little difficult for me to imagine countries where patients are unaware of what their diagnosis mean or what their treatment will do. Moreover, I do think that this responsibility is even stronger in places like Botswana where people do not always have the ability to go check up that the hospital every week and where people do not have easy access to health care. In these cases, health illiteracy causes people to stop treatment as soon as they feel better, or to misuse their medication, which can lead to resistance. However, as you mentioned, it is not always easy for the physicians to find the time to explain the treatment to each patient they see, especially if they have to see many patients or if there is a lack of medical personnel to help out with that.

    Moreover, since health literacy is a big problem and that the countries that need it the most lack resources and workers to educate people on the issue, I think that it might be helpful for health organizations to work with the government to set up health literacy interventions such as posters, classes with volunteers or having volunteers in clinics and hospitals to explain treatments to patients. However, it is very important to look at the available resources and the culture of the population before implementing these measures. Working closely with the people who need help, and asking them what they need is the best and most efficient way for these measures to have big lasting change.

    Finally, I do think that health literacy can empower patients to advocate for their health needs and by doing so, will make them more aware of the change that needs to happen to help others. By educating one person, you empower them to become part of the change in their community.

  9. Thank you all for your insightful and thought-provoking responses to my blog post. I really appreciate everyone’s ideas and questions.

    I see several themes in your comments that I would like to address. Sachit, Thu, and Yuki pointed out (and I agree) that the patient-physician dynamic we observed in “Improvising Medicine” contrasted starkly with our own experiences in the U.S., where although doctors are understood to me more knowledgeable than patients, patients do not lose their agency or authority in their interactions with doctors. I see a strong correlation between the degree of agency a patient possesses and the number of physicians to whom the patient has access. Here in the U.S., Dr. Farmer describes a “veritable thicket of hospitals” (“Infections and Inequalities” 20). Many Americans have the privilege of choosing their physicians and they pay their physicians to provide the best care and to be attentive to all of their needs. There is the sense that doctors are working for patients.

    In Botswana and many other areas in developing countries, patients may not have access to more than one clinic or hospital (some may not even have access to one). They are therefore forced into trusting and following the direction of whichever physician they have access to. Julianne, Nini, and Claire acknowledged that although all patients deserve a physician that answers their questions diligently and improves their literacy regarding their disease and health in general, this is simply not feasible in communities with a severe shortage of physicians. When confronted with this issue, Julianne, Nini, and Claire assert that physicians should prioritize diagnosing and treating as many patients as possible over spending adequate time with each patient. While I do agree, this form of reasoning strikes me as “cost-effectiveness” logic. For instance: “Given limited resources (physicians), the greatest good for the greatest number can be accomplished by…”. I am inclined here to agree with what I believe Dr. Farmer would assert: why should we have to choose? The resources exist in the world to ensure that all people globally receive the best health care, which means there being a certain number of physicians per capita in every country.

    Many of you also have good ideas regarding how to move forward in improving health literacy. Initiatives aiming to improve health literacy in certain areas can either be targeted at the population level by identifying gaps in popular knowledge and launching awareness-raising or education campaigns, or at the individual level by finding a way to encourage or enable doctors to interact more extensively with their patients. I really like Katherine’s idea that Peace Corps workers could be involved in one or both of these types of initiatives. Perhaps support groups/education groups could be established at clinics where patients with similar illnesses can gather and be taught collectively by a trained health worker or nurse as well as ask questions of each other.

    Lastly I want to emphasize that while I believe an increased focus on health literacy in global health could potentially lead to patient empowerment and social change, I do not wish to or think it is right to define “empowerment” for others. There are many social and political forces at play that constrain individual’s agency and power in society. I simply believe that health literacy is one tool that can be used to give patients more authority over their own bodies and give them the ability to advocate for their health needs.

    1. Hi Mira,

      Thank you for your response. I think you addressed many important issues regarding this topic in a neat fashion by relating it to what Farmer and others have studied and wrote about.

      In my first comment, I mentioned the use of a cost-effective plan, where physicians should see as many patients as possible in these resource-poor settings. In your response, you mention the negative qualities of this cost-effective plan. Farmer mentions how there shouldn’t be a situation where we have to choose who to help. I totally agree with this. However, the reality of the situation is that there aren’t enough physicians to treat everyone who needs to be treated. How do you think this issue should be addressed? Do you think NGOs are responsible for helping this situation?

      1. Hey Julianne,

        To try to address your questions, I agree with you (and Paul Farmer) that we shouldn’t have to choose which patients to treat and which patients not to treat. It definitely depends on the situation, but if an NGO were to try to help in this situation, I think we should keep the Partners in Health model in mind, especially in terms of working alongside community health workers and the public sector. The NGOs can bring in physicians from developed countries as a temporary solution to assist in a humanitarian manner (in a way similar to MSF, except this would not be limited to emergency situations), but these physicians should also be training community members to diagnose and treat simple and common illnesses to try to build a sustainable health care system.

        The NGO would also need to make sure to work through the public sector with the government in order to improve infrastructures that are already in place. The Zaidi article that we read emphasized the need for this collaboration between the NGO and government, since such a collaboration can ensure a sustainable health care system. The NGO can work with the government to rebuild and improve the primary health care system that takes a biosocial approach of not only treating illnesses, but also providing the financial means of obtaining medication and ensuring food stability for each family, for instance.

        In terms of the long run, however, there would need to be bigger-scale programs in place. This would include more educational facilities to train and certify physicians and nurses as well as research facilities to prevent a brain drain, where skilled physicians and scientists leave their communities to travel to developed nations in search of better research opportunities.

        1. Hi Yuki,

          Thanks for your response. You bring up a great point – it is important to keep in mind the Partners In Health model while dealing with this situation. To bring in physicians from a developed country is an effective way to address this issue, but it will be important for these physicians to keep an incentive to help those suffering. It is also important to train these physicians to be culturally sensitive, as this will help them when interacting with patients.
          As you mentioned, finding a long-term solution requires more in-depth analysis of the problem and potential fixes. To educate and train those of developing countries is the most ideal solution, as the country can build on up from their own citizens.

  10. First off, thank you, Mira, for discussing inadequate health literacy as an unequally distributed medical resource. I enjoyed reading your follow-up comment to everyone’s thoughts on your questions about the patient-doctor relationship, the importance of health literacy as a patient tool, and the necessity of patient empowerment.

    I would like to address your first question that asks us to consider the extent to which we expect physicians to ensure that their patients and/or their loved ones fully understand what is going on. As many have stated previously, there is some kind of unspoken agreement between physicians and patients in the U.S. – physicians explain courses of infection, procedures, and treatment or end-of-life options while patients ask their outstanding questions. However, I would like us to think about whom are we really talking about when we say that there’s too much health literacy in the U.S. This leads me to think that a conversation about ‘us’ vs. ‘them’ is occurring, so consider the population at hand. Are we thinking about generally educated, middle-class Americans who have a primary care physician? Or are we thinking about undocumented persons, persons whose first language is not English, etc. who also live in the U.S.? Are we thinking about those who are too shy or humble to ask their doctor a question? As a Latina growing up in a South American family, I witnessed my parents acquiesce to their physician’s orders without so much as an inquisitive phrase. In essence, I’m trying to make the point that increasing health literacy, a form of knowledge and of privilege as you and Sachit framed it, is imperative for all groups of people – those here as well as those abroad.

    This topic then brings me to the discussions about health literacy promotion and patient empowerment. From what I understand, health literacy is seen as a method of increasing patients’ abilities to become their own health advocates. With the right knowledge, patients will be able to understand and appreciate their rights regarding their health. Moreover, like Claire alluded to, health literacy will prevent misuse of medication and ensure that patients complete their treatments. But can improved health literacy do all this? I think that cultural barriers encompass much more than not understanding a language or the medical terminology used by a doctor. As seen in the article linked below, education does not directly translate into patient compliance: “My brother, who works at a company that doesn’t provide him with health insurance, has gone seven years without seeing a doctor. One friend’s mother, who holds a Ph.D. and has lived in the United States for more than 30 years, still needed her daughter’s urging to visit a doctor and discuss her lengthy battle with depression.” Thus, we see how improving health literacy, although a commendable task, may not be the catchall solution for social change.

    http://www.theatlantic.com/health/archive/2014/05/why-many-latinos-dread-going-to-the-doctor/361547/

  11. Hi Natalie,

    Thanks so much for your comment. I really appreciate your reminding us not to generalize the population we speak of within the U.S. While many in the U.S. do feel respected by their doctors and comfortable to advocate for themselves and raise their misunderstandings, many do not. I could not agree with you more that we need to remember the vulnerable and marginalized populations within our own communities such as undocumented immigrants, and that the need to further health literacy is important at home as well as abroad. Thank you for bringing this up.

    I also agree with you that health literacy is certainly not the catchall solution for social change. As you mention, structural violence must be addressed, individual patients treated with high quality care, cultural barriers considered, etc. in order to create meaningful social change. That being said, I think that increased health literacy is a tool that can be used among other tools to fight structural violence, treat patients, and break down cultural barriers – so I think health literacy is important to keep in mind.

    Thanks again,
    Mira

  12. Hi Mira,

    Thanks so much for your post! You raised a lot of interesting and challenging questions. I agree with you that ideally, doctors have a responsibility to ensure that patients understand their treatment. However, I am not sure how tangible this actually is. In many developing countries the ratio of physicians to patients is incredibly low (something that I probably can’t even imagine without the experience), and in order to see as many patients as possible with the limited time that they have, doctors have to cut conversations about patient health short. Perhaps this could be solved by having more community health workers that could follow patients that a physician had seen and track how they are doing and hold health education sessions, etc.

    I also think a lot of health education stems from general education. A lot of basic, healthy living practices are taught in school. Educated people are typically healthier than non-educated people for a variety of reasons. I think when we promote health education, we also need to promote general education and advocate for children to stay in school.

    I think that we have seen a lot of individual examples (Monique in Monique and the Mango Rains) of how general education, and health education, can lead individuals to become catalysts for change in their communities.

    Thanks again for your post!

    -Rebecca

  13. Hi Mira,
    Thank you for your well written post on the necessity of health literacy. I thought you did a great job explaining how many patient’s “pent-up desire for biomedical knowledge” is more than just a desire–it is a right.

    My initial thought while reading your article, like a couple other commenters, was to immediately think about the trade-off between treating the greatest number of patients vs. providing comprehensive care to every patient so they understand what they are going through. I appreciated your comment response about how Paul Farmer would fight back on the notion that this is a trade-off and instead seek to simply increase the number of per capita doctors. Another question I had while reading this was if patients who do not have disease diagnosis medical treatments explained to them really have equal health outcomes to those that have everything clearly taught to them. We’ve seen countless examples over the semester of health interventions that have failed because of a lack of clear communication to patients, such as how people misused the malaria nets they were given to strain their water, and thus did not protect themselves against malaria AND poisoned their water supply. While you caution against looking at how much time doctors spend with their patients in a cost-benefit like analysis, I wonder if spending more time with patients actually is essentially to patient compliance and positive health outcomes, or if most treatments do not require active participation from the patient. As you stress, health literacy is critical to ensure patients are receiving proper care, and allow people to take control of their own bodies.

  14. Rebecca and Alana,

    Thank you for your comments and thoughts.

    Rebecca – I agree with you that the huge shortage of physicians means that we should look into other ways of improving health literacy so that physicians are able to see as many patients as possible. I like your idea of increasing the roles of community health workers in patient care to hold the responsibility for patient understanding. Having community health workers hold group health education sessions in which patients could ask their questions and learn more about their illness would be a very low-cost way to increase health literacy. And of course, advocating for children to stay in school is also related to health literacy – thank you for pointing that out.

    Alana – I definitely agree with you that increasing patient literacy by ensuring that physicians spend adequate time with patients is not only related to protecting patient dignity, but to ensuring positive health outcomes. Perhaps for this reason cost-effectiveness analysis is inappropriate since spending more time with patients is not an “extra” action that can be weighed against other possible actions, but spending adequate time with patients is simply an essential part of the process of seeing a patient.

    Thanks,
    Mira

  15. Hi Mira!

    This blog post is of particular interest to me as I am participating in the TRI-Lab Designing Education for Better Prisoner and Community Health next semester, and I’m just beginning to grapple with your third question. Is health literacy (or the improvement of an individual’s comprehension of at least basic health information and their access to health care) a worthwhile intervention when it may not directly address the most significant barriers to treatment and care? This reminds me of our class conversation about the Biehl and Petryna reading concerning an antidepressants program in La Pincoya. Were antidepressants still a valuable intervention when they did not solve the issues that most contribute to the source of depression in La Pincoya, issues such as job insecurity and poverty? Is health literacy only empowering when other aspects of a person’s life are not disempowering? While I would not suggest we should privilege health literacy as some kind of perfect solution or magic bullet, not every intervention can pursue the elimination of inequality in the most perfect of ways, and health literacy is certainly still a vital aspect that assists with the improvement of utilization of resources to people who need or want them.

  16. Elena,

    Thank you for your comment! I love how you phrased the limited capability of improved health literacy in reducing inequality. It is certainly not a perfect solution or magic bullet, but it still may have a worthwhile role to play in the elimination of inequality. Low health literacy is not the only barrier that prevents people in resource-poor settings from getting adequate health care, but it often is one of many barriers, all of which we must address.

    Thanks,
    Mira

  17. Hi Mira, thanks for your post! I agree with much of what you wrote about the problems and room for improvement in the doctor-patient relationship in Botswana, and the way that this could be alleviated through increased health literacy. All of the ways you tie health literacy to other medicine-related problems, such as patient empowerment and understanding, I think are very compelling. The relationship you bring up between accountability and health literacy, in particular, is an interesting one – I really like the idea that health literacy and more knowledge on the part of the patient could create a dialogue about treatment, and patient advocacy for higher quality care. That said, do you really think that education would be sufficient? Other factors, like the ability to pay for that care, seem to be even more of a limiting factor. And doctors will continue to act as gatekeepers to medical resources. Further, what if the resources simply are not available? Still, I like the idea of the knowledgable patient self-advocate; I just think I want change perhaps more quickly, or am perhaps more concerned about providing resources first…

    I did want to say, too, that I think we should be careful in our judgements of doctors like Dr. P, and skeptical of what such individuals would be able to do to themselves change such a system, at least without an increase in resources. As you point out Dr. P, for example, is the only oncologist and sees between 25 and 40 patients per day – basically, he works for little, is incredibly busy, and helps many. Without dismissing the complications in his relationship to those he helps, fraught with ideas of a “white savior” and other remnants of colonialism, he is helping people. That’s more than I’m doing right now, at least… And Farmer argues for something similar as well – that doctors not only can but have the imperative to spend their valuable time saving lives, not listening to stories or explaining details, as much as he might want to or think it should be done in general. I’m not sure what I think, but I just wanted to bring this up. I think probably it’s a complicated mixture, saving lives but educating people and treating them as learning subjects, as people, and teaching them or at least people from their community to be able to help themselves and others. I think, too, that it ideally would be done through community health workers and a stronger education system, allowing doctors to spend their time as Farmer describes.

  18. Allison,

    Thank you for your comment. I certainly agree with you, which others have pointed out as well, that education is not enough to solve health inequalities. Providing resources may even be a priority. However, I would argue that resources and increased education can be offered in tandem. Further, perhaps increased education can pave the way to increased access to resources as patients gain the knowledge of what they need access to and can advocate for it more effectively.

    I also do not mean to judge Dr. P too harshly or put the responsibility of fixing the lack of resources (including lack of physicians) on his shoulders. He is definitely doing the best he can, and his best is providing help to many people, and saving many lives. In using evidence of his lack of communication with his patients, I was simply using him as an example of the brokenness of the system of care in Botswana, which we find in many other resource-poor areas as well.

    Thanks again,
    Mira

Leave a Reply to Rebecca Forman Cancel reply

Your email address will not be published. Required fields are marked *