Mohamadou Preveiw

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 89 GET PREVENTIVE MEDICINES IF YOU NEED THEM Aspirin. If you are 55 or older, ask your health care team if you should take aspirin to prevent strokes. Your health care team can help you decide whether taking aspirin to prevent stroke is right for you. Breast Cancer drugs. Talk to your doctor about your risks for breast cancer. Many factors over the course of a lifetime can influence your breast cancer risk. You can’t change some factors, such as getting older or your family history, but you can help lower your risk of breast cancer by taking care of your health in the following ways: • Keep a healthy weight. • Exercise regularly (at least four hours a week). • Research shows that lack of nighttime sleep can be a risk factor. • Don’t drink alcohol, or limit alcoholic drinks to no more than one per day. • Avoid exposure to chemicals that can cause cancer (carcinogens) and chemicals that interfere with the normal function of the body. • Limit exposure to radiation from medical imaging tests like X- rays, CT scans, and PET scans if not medically necessary. • If you are taking, or have been told to take hormone replacement therapy or oral contraceptives (birth control pills), ask your doctor about the risks and find out if it is right for you. • Breastfeed any children you may have, if possible. If you have a family history of breast cancer or inherited changes in your BRCA1 and BRCA2 genes, you may be at high risk for getting breast can- cer. Talk to your doctor about more ways to lower your risk. Staying healthy throughout your life will lower your risk of developing cancer, and improve your chances of surviving cancer if it occurs.

90 MOHAMADOU M. DIENE Visit http://www.cdc.gov/cancer/breast/basic_info/high-risk.htm to learn more about breast cancer risks. Folic Acid. If you are of an age at which you can get pregnant, you should take a daily supplement containing 0.4 to 0.8 mg of folic acid. Vitamin D To avoid Falls. If you are 65 or older and have a history of falls, mobility problems, or other risks for falling, ask your doctor about taking a vitamin D supplement to help reduce your chances of falling. Exercise and physical therapy may also help. IMMUNIZATIONS: • Get a flu shot every year. • Get shots for tetanus, diphtheria, and whooping cough. Get teta- nus booster if it has been more than 10 years since your last shot. • If you are 60 or older, get a shot to prevent shingles. • If you are 65 or older, get a pneumonia shot. • Talk with your health care team about whether you need other vaccinations. You can also find which ones you need by going to: http://www.cdc/gov/vaccines/. Take steps to good health. • Be physically active and make healthy food choices. Learn how at http://www.healthfinder.gov/HealthTopics/Category/nutrition- and-physical-activity. • Get to a healthy weight and stay there. Balance the calories you take in from food and drink with the calories you burn off by your

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 91 activities. • Be tobacco free. For tips on how to quit, go to http://www.smokefree.gov. To talk to someone about how to quit, call the National Quitline: 1-800-QUITNOW (784-8669). • If you drink alcohol, have no more than one drink per day. Get more information on good health. Check out these Federal Government Web sites: Healthfinder.gov. Guides and tools for healthy living, an encyclopedia of health-related topics, health news, and more. Go to: http://www.health- finder.gov. MedlinePlus. Health information from government agencies and health organizations, including a medical encyclopedia and health tools. Go to: http://medlineplus.gov. Questions are the Answer. Information on how to get involved in your health care by asking questions, understanding your condition, and learning about your options. Go to: http://www.ahrq.gov/questionsaretheanswer. If you don’t have access to a computer, talk to your local librarian about health information in the library. Don’t forget to talk with your doctor about what you’ve learned online.

CHAPTER 14 THE DOCTOR–PATIENT RELATIONSHIP The doctor–patient relationship is central to the practice of healthcare and is essential for the delivery of high-quality health care in the diagnosis and treatment of disease. The doctor–patient relationship forms one of the foundations of contemporary medical ethics. Most universities teach students from the beginning even before they set foot in hospitals to maintain a professional rapport with patients, uphold patients’ dignity, and respect their privacy. Talcott Parsons was the first social scientist to theorize the doctor-patient relationship, and his functionalist, role-based approach defined analysis of the doctor-patient relationship for the next two decades. Parsons began with

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 93 the assumption that illness was a form of dysfunctional deviance that re- quired reintegration with the social organism. Illness, or feigned illness, ex- empted people from work and other responsibilities, and thus was potentially detrimental to the social order if uncontrolled. Maintaining the social order required the development of a legitimized “sick role” to control this deviance, and make illness a transitional state back to normal role performance. Tal- cott Parsons saw the patients in a sick role mode as having two rights: (1) They are exempt from their usual social roles, (2) They are not responsible for their sickness; and two obligations: (1) They should try to get better, and if unable, (2) Seek medical care and follow the doctors’ advice. For decades we understood the medical profession as a conventional nu- clear family with doctor- father, nurse-mother, and patient-child. But our hope for total wisdom and protection from the father is forlorn, our wish for total comfort and protection from the mother unachievable, and the patient has grown up. A new three-way partnership should replace this van- ishing family. PARTNERSHIP AND ALLIANCES In fact, the doctor is a supplier of health care services, and the patient a consumer of healthcare services. Supplier management has evolved to em- phasize the importance of both parties working together to build strategic relationship that is known by many terms: coalition, joint venture, strategic alliance, partnership. Following are some critical aspects necessary to have a successful partner- ship/alliance:

94 MOHAMADOU M. DIENE • Mutual benefit: both parties in a strategic relationship must profit from the relationship. It has to be a win- win mutual benefit. No one can measure exactly the ripple effect of a satisfied patient who by word of mouth will tell his family, friends, which is a potential source of referrals for the doctor. • Trust building: the element of trust is essential for short or long term relationship. Doctors and patients must feel free to exchange ideas with respect to privacy of health-related information. • Open and complete communication: all responsibilities and ex- pectations of the relationship must be clearly and frequently com- municated. The most indispensable element of a customer-sup- plier relationship is dialogue and feedback. This makes available information and ideas that are very useful to both parties. • Interdependence of parties: effective partnership fosters mutual as- sistance, joint planning, and other forms of close collaboration. PARTNERING WITH YOUR DOCTOR Many people are more satisfied with their health care if they share the re- sponsibility with their doctor. Your doctor is an expert on medical care, but again you are the expert on you. Often there is more than one option for diagnosing or treating a condition. By being a partner with your doctor, you can help choose the option that best fits your values, beliefs, and life- style. You also will feel more confident about carrying out the chosen treat- ment. Here are some tips for being a good partner with your doctor: • Build a relationship with your doctor. Let your doctor know that you want to be a partner in your health care. Tell the doctor what your expectations are. • Be an active participant in each appointment. Listen carefully to

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 95 what your doctor says. If you do not understand a diagnosis or treatment, ask questions. And tell the doctor if you think that fol- lowing the prescribed treatment will be hard for you. • Have a family member or friend with you during your appoint- ment if possible. He or she can take notes, ask questions to clarify information, and help you remember what your doctor says. • Ask for instructions. Before you leave the doctor’s office, make sure you know what you are supposed to do to care for yourself. Ask for written information, links to videos and websites, and any other instructions. • Be sure to make and go to all appointments and call your doctor if you are having problems. It’s also a good idea to know your test results and keep a list of the medicines you take. Patients must have confidence in the competence of their physician and must feel that they can confide in him or her. For most physicians, the es- tablishment of good rapport with a patient is important. Some medical spe- cialties, such as psychiatry and family medicine, emphasize the physician- patient relationship more than others such as pathology or radiology. The quality of the patient-physician relationship is important to both parties. The better the relationship in terms of mutual respect, knowledge, trust, shared values and perspectives about disease and life, and time availa- ble, the better will be the amount and quality of information about the pa- tient’s disease transferred in both directions, enhancing accuracy of diagno- sis and increasing the patient’s knowledge about the disease. Where such a relationship is poor, the physician’s ability to make a full assessment is com- promised and the patient is more likely to distrust the diagnosis and pro- posed treatment causing decreased compliance to actually follow the medi- cal advice. In these circumstances and also in cases where there is genuine divergence of medical opinions, a second opinion from another physician may be sought or the patient may choose to go to another physician.

96 MOHAMADOU M. DIENE ASPECTS OF THAT RELATIONSHIP The following aspects of the doctor–patient relationship are the subject of commentary and discussion. Informed consent Showing respect to patient is for the doctor to be truthful in informing the patients of their health and to be direct in asking for the patient’s consent before giving treatment. Historically in many cultures there has been a shift from paternalism or “doctor knows best” to the idea that patients must have a choice in the provision of their care, and be given the right to make in- formed consent to medical procedures. There can be issues with how to handle informed consent in a doctor-patient relationship, for instance with patients who don’t want to know the truth about their condition. Also there are ethical concerns regarding the use of placebo or sugar pill, and whether or not giving a placebo leads to an undermining of trust between doctor and patient and whether deceiving a patient for their own good is compat- ible with a respectful and consent-based doctor-patient relationship. Shared decision making Shared decision making is the idea that as a patient gives informed consent to treatment, that he or she also is given an opportunity to choose among the treatment options according to his or her own treatment goals and wishes. Giving and getting information are two important steps in talking with your doctor. The third big step is making decisions about your care. A practice which is an alternative to this is for the doctor to make a person’s health decisions without considering that person’s treatment goals or having that person’s input into the decision-making process. Physician superiority The physician may be viewed as superior to the patient, because the physi- cian has the knowledge and credentials, and is most often the one who is

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 97 on home ground. The physician-patient relationship is also complicated by the patient’s suffering (patient derives from the Latin patior, “to suffer”) and limited abil- ity to relieve it on his or her own, potentially resulting in a state of despera- tion and dependency on the physician. A physician should at least be aware of these disparities in order to establish rapport and optimize communica- tion with the patient. It may be further beneficial for the doctor-patient relationship to have a form of shared care with patient empowerment to take a major degree of responsibility for her or his care. Patient empowerment Involves giving patients greater responsibility and authority. Patient em- powerment is based on the belief that patients have the ability to take on more responsibility and authority than has traditionally been given them, and that better health outcomes will result. Empowerment equals providing patients the means for making influen- tial decisions in their health care and treatment, is conferring the right to make decision and take action. It does not mean that the doctor relinquishes all authority, totally dele- gates decision making and allows operating without accountability. Em- powerment requires the transfer of authority with a clear agreement about expectations, responsibilities and boundaries. This process takes place over a period of time as both the doctor and the patient become comfortable with the concept and implications of empowerment. Patient involvement There’s currently a movement toward patient-centered care which gives pa- tients the opportunity to be more involved. This is often a good thing, but it’s also important to remember that one patient’s empowerment is an- other’s burden. Some patients like to receive a lot of information about their condition and prefer to be a leader or equal partner in making decisions about their health.

98 MOHAMADOU M. DIENE Others would rather just have the doctor sift through the information and tell them what to do. The important thing is for doctors to ask their patients how active they want to be in their own care. And this meeting of the minds relates to com- munication styles as well. Some cancer treating doctors asks their patients how much information they want so they can communicate in a way that is comfortable for them. There are some patients who like to know all the gory details, statistics, and curves, and there are some patients who like just the broad brushes of what this disease might mean. Where do you fall in that group? Have you ever had a doctor ask you that?

CHAPTER 15 ENGAGING HEALTHCARE USERS: A FRAMEWORK FOR HEALTHY INDIVIDUALS AND COMMUNITIES The American Hospital Association’s (AHA) framework for health reform, Health for Life, embraces the need to engage patients and families and contemplates the role of hospitals and health care sys- tems in improving the overall health of the population and communities they are serving. Within this context, in 2012 the AHA Committee on Re- search focused on actively engaging health care users to improve outcomes and reduce health care costs. The committee developed the report, Engaging Health Care Users: A

100 MOHAMADOU M. DIENE Framework for Healthy Individuals and Communities, advocating hospitals to become more “activist” in their orientation and move “upstream”—that is to do more to engage patients and intervene earlier in the disease states. Because achieving “Health for Life” requires action from key players within the health care system to create a culture that supports health care user en- gagement, the report introduces a continuum for engagement from infor- mation sharing to partnerships. It recommends entry points for user en- gagement occurring at four different levels of the health care system. • Individual: The aim is to increase the skills, knowledge and un- derstanding of patients and families about what to expect when re- ceiving care. • Health Care Team: The focus is to promote shared understand- ing of expectations among patients and providers when seeking care. • Organization: The objective is to encourage partnerships and inte- grate the patient and family perspective into all aspects of hospital operations. • Community: The emphasis is to expand the focus beyond the hospital setting and find opportunities to improve overall commu- nity health. WHAT IS HEALTHCARE USER ENGAGEMENT? Health care user engagement is a set of behaviors by health professionals, a set of organizational policies and procedures and a set of individual and col- lective mindsets and cultural philosophies that foster both the inclusion of patients and family members as active members of the health care team and encourage collaborative partnerships with patients and families, providers and communities.

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 101 Why Patient and Family Engagement matters? Fundamentally, hospitals exist to meet the physical, social and emotional needs of patients and their families. None of these needs can be met without fully engaging patients and families in their own care and partnering with patients and families in redesigning, improving and evaluating health care services. From a business perspective patient and family engagement is crit- ical because it contributes to outcomes directly affecting hospital costs and reimbursement. Five Ways Patient and Family Engagement Directly Impacts Your Hospital (1) Contributes to better clinical outcomes (2) Reduces institutional and individual costs of care (3) Increases adherence to recommended treatment regimens, which can lead to fewer complications and re-hospitalizations. (4) Improves patient satisfaction with care coordination and other patient experience measures that impact the hospital’s reimburse- ment rates from Medicare and other payers. (5) Enables compliance with patient engagement requirements in- cluded in HITEC meaningful use. EXAMPLES OF HEALTH CARE USER ENGAGEMENT STRATEGIES The health care system providing to the community health education and health literacy classes, and/or providing healthy cooking and physical edu- cation classes, using patient navigators and peers to provide support, last but not least making local policy changes that promote healthier lifestyles (e.g., eliminating sugary drinks from school cafeterias).

102 MOHAMADOU M. DIENE The health care organization should use engagement strategies like in- volving patients and families in patient and family advisory councils, gov- ernance and other committees, removing restrictions on visiting policies for families, opening access to medical records, using email and social media technology (e.g., Facebook, Twitter). At the individual level, seeking health information and knowledge, ad- hering to treatment plans and medication regimen, participating in shared decision making, engaging in wellness activities are few examples of health care users engagement strategies. The healthcare team should provide shared decision making tools, use pa- tient teach-back method, and use clinic-based multidisciplinary care teams. Benefiting or pleasing A dilemma may arise in situations where determining the most efficient treatment or encountering avoidance of treatment creates a disagreement between the physician and the patient for any number of reasons. In such cases, the physician needs strategies for presenting unfavorable treatment options or unwelcome information in such a way that minimizes strain on the doctor-patient relationship while benefiting the patient’s overall physi- cal health and best interests. Formal or casual There may be differences in opinion between the doctor and patient in how formal or casual the doctor-patient relationship should be. For instance, some patients want to be addressed by their first names more often than is currently the case. On the other hand, most patients don’t want to call the doctor by his or her first name. Some familiarity with the doctor generally makes it easier for patients to talk about intimate issues such as sexual subjects, but for some patients, a very high level of familiarity may make the patient reluctant to reveal such intimate issues.

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 103 Transitional Care Transitions of patients between health care practitioners may decrease the quality of care in the time it takes to reestablish proper doctor-patient rela- tionship. Generally, the doctor-patient relationship is facilitated by conti- nuity of care in regard to attending personnel. Special strategies of inte- grated care may be required where multiple health care providers are in- volved, including horizontal integration (linking similar levels of care, e.g. multi-professional teams) and vertical integration (linking different levels of care, e.g. primary, secondary and tertiary care).

CHAPTER 16 THE CHANGING BALANCE OF POWER BETWEEN DOCTORS AND PATIENTS A study published in the Journal of Internal Medicine confirms that when doctors and patients have different ideas about the proper balance of power in their relationship compliance suffers. The researchers looked at how well patients with both diabetes and high blood pressure managed their diseases through the prism of their relation- ship with their doctors. When patients believe that they should have more control over their health than their doctors believe they should, they are less compliant with their medications. It seems that frustration is one likely reason for this. If they’re not getting

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 105 the control they expect or prefer, they become less satisfied with the health care they receive and react to that loss of control by being less likely to follow the doctor’s recommendations including filling refills. Advance preparation for your doctor’s visit is a vital step toward becom- ing a partner in your own health care and an advocate for your health and well-being. A good doctor will always encourage your desire to understand as much as possible about your condition and will welcome your active par- ticipation in your care. In today’s managed care environment, the time you spend face-to-face with your physician is limited. To get the most from your health care providers (HCPs) and an accurate diagnosis, preparation is the key. Good preparation will also go a long way to alleviate any anxiety you may be feeling about the appointment. You increase the likelihood of an accurate diagnosis if you come prepared with the details and history of your problem, anticipate questions, know your medications, and bring your medical records. KNOWLEDGE IS POWER Doctors have the medical knowledge but you’re the one who knows your body the best. So, if you understand what seems right and what seems wrong with your own body, then you know when to push back a little bit and say, ‘You know, this just isn’t working,’ or ‘I’m not sure you’ve an- swered my question.’ Talking above patients’ heads can make them feel powerless. On the other hand, talking at eye level and making eye contact can improve the doctor-patient interaction. When doctors simplify medical jargon like cal- caneus to heel bone, that helps too. The Doctor-Patient Relationship in the Internet Age The advent of the “information technology age” has led to a rapid change in the doctor‐patient dynamic. Before the internet became host to a pleth- ora of medical information and advice, the doctor‐patient relationship was

106 MOHAMADOU M. DIENE confined primarily to office consultations. In that setting doctors advised patients on the best course of medical action, and the patients weighed their options before proceeding. Now the modern patient has the ability to access extensive information on nearly every medical condition. Today the patient arrives armed with information about potential diagnoses and courses of treatment. This inversion of roles presents a number of ramifications for the routine practice of medicine. Patients are in a position to lobby their doctors about treatment, and treat medical advice with skepticism and concern. However, despite the fact that access to a wealth of online resources has the potential to alter the doctor‐patient dynamic, it has not necessarily replaced healthcare providers as the essential medium of care. The full scope of this new doctor‐patient relationship involves access to information, the quality of the information accessed, and how that information is interpreted by patients. The early evidence of this shift in patient‐centered information resulted in a number of theories on how the change would affect the doctor‐patient relationship. The multitude of medical information online allowed for po- tential positive effects for the patient; the access to knowledge had the po- tential to democratize the healthcare process. Patients would theoretically have the ability to play a larger role in medical decision‐making, while the clinician would serve as an informed guide. This drive to the internet for information may have been fueled by an already strained doctor‐patient re- lationship. As the time doctors spent with their patients declined, the power of the internet grew, and patients began to use the internet out of frustra- tion. The benefits of the internet do not end with access to information as support groups for individual disease have grown in popularity, and a num- ber of studies suggest that patients who participate in these groups “gained satisfaction” with their medical experience. Furthermore, a Harris interac- tive poll conducted in 2001 indicated that patients who have done research are more likely to have more educated interactions with their physicians where they ask more detailed questions regarding their conditions and proper treatment. And patients reported feeling that they had used the limited time they had

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 107 with their physician more effectively when equipped with the proper infor- mation before making a visit. As medical information has become widely ac- cessible online, its use has grown to be second‐nature for patients who can research their symptoms and ailments to complement the information they receive from medical professionals. Ultimately, this research positively rein- forces interactions with physicians as patients are not relying on online infor- mation, but rather using it to augment the traditional clinical experience. The resistance to the use of online medical information is often rooted in questions about the quality of the available information. Another significant and potentially negative effect of online medical in- formation relates to the historical nature of the doctor‐patient relationship. The use of online medical information by a patient in a clinical setting can be interpreted as a challenge to the authority of the doctor. This challenge is exacerbated when patients decide to follow a course of treatment based on their own research that is contrary to the advice of their physician. His- torically, patients have abided by the advice of physicians without the re- sources to question this information. Unfortunately, physicians are often unfamiliar with the medical resources their patients use, and physicians re- tain a higher degree of skepticism about online data than their patients. The potential for this antagonistic relationship becoming the standard dynamic, however, is slim. With the excess of information online, doctors can become “partners” to their patients rather than authoritarian guides, but still retain their clinical authority during this transition. Doctors, espe- cially primary care physicians, have the opportunity to take an active role in how their patients use the internet. If clinicians accept that their patients are likely to use online resources, they can assist their patients by providing a list of websites that have been noted for scientific accuracy and peer re- view. Patients may read extensively about treatments on the internet, but they are still required to visit a physician to receive any of those treatments. Recently, a number of medical websites have contracted physicians to write articles and give advice on content. Although physicians must take great care when providing advice online, an appropriate intersection between in‐

108 MOHAMADOU M. DIENE office care and virtual advice contributes to better patient well‐being. If doc- tors do not focus on authority structures but instead anticipate the incor- poration of online information into their practice, the dynamic between doctor and patient may successfully be transformed into a partnership. The internet has shifted some knowledge power toward patients, who are now likely to have researched the symptoms, located a variety of treatment options and have the pile of printouts to prove it. But instead of putting doctors on the defensive with a chunk of information, I suggest saying something like, ‘I read about X—can you tell me how that would or wouldn’t apply?’ Now you’re not in an ‘in your face’ position. And I think doctors will often hear that better. EVALUATING HEALTH INFORMATION ONLINE Many people search online to find information about medical problems and health issues. However, not all health information on the web is of equal quality. How do you find websites that are accurate and reliable? The fol- lowing questions may be useful to consider when you look at a health-re- lated website. • Who is responsible for the content? Is it a government agency (.gov), national nonprofit organization, or professional associa- tion? An individual? A commercial organization? • If you are reading an article or blog, what are the author’s creden- tials? Is the author affiliated with any major medical institutions? • Who reviews the material? Is there a medical or scientific advisory board that reads the medical content before it is made available to the public? • Are sources cited for the statistical information? For example, it’s easy enough to say “4 out of 5 doctors agree…” but where did that statistic comes from? • Is the purpose and goal of the sponsoring organization clearly

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 109 stated? • Is there a way to contact the sponsor for more information or to verify information presented? • Is the site supported by public funds or donations? If it includes advertisements, are they separate from the content? • Because health information gets outdated so quickly, does the website post the source and date for the information? • If you have to register, is it clear how your personal information will be used? Does the site have a clear privacy policy? • Is the website trying to sell you something? BEDSIDE MANNER A good bedside manner is typically one that reassures and comforts the pa- tient while remaining honest about a diagnosis. Vocal tones, body language, openness, presence, and concealment of attitude may all affect bedside man- ner. Poor bedside manner leaves the patient feeling unsatisfied, worried, frightened, or alone. Bedside manner becomes difficult when a healthcare professional must explain an unfavorable diagnosis to the patient, while keeping the patient from being alarmed. Who Wears the Pants? Everyone hates medical exam gowns. They’re flimsy and revealing, and their gap in the worst places no matter how you tie them. While the gown is a necessary evil, it puts you at a disadvantage when you’re discussing the treatment plan with your fully clothed physician. Many doctors give you a chance to dress after the exam before returning to talk—but if not, ask for five minutes to pull yourself back together. White coats—and senior doctors get the longest coats—can be subtle sig- nals of the doctor-patient power imbalance. In their practices, some doctors do not wear a white coat and patients do notice. Doctors who practice in less affluent communities might want to tone down obvious displays of

110 MOHAMADOU M. DIENE wealth or status in their work attire. For example, guidelines for some pro- gram for multicultural health advise physicians to be mindful about wearing expensive jewelry. Emphasis on Empathy Doctors can help patients feel safe and more in control, even when they’re physically or emotionally vulnerable during a visit. Asking patients personal questions when they walk into the doctor’s office before the physical exam can help them feel comfortable. A little empathy goes a long way, and many doctors say they treat patients the way they’d want their own family mem- bers—or themselves—to be treated. OVER-SPECIALIZATION A N D T H E D E C L I N E OF P R I M A R Y C A R E One trend has been the rapid proliferation of specialization among Ameri- can physicians. Only one in ten American physicians is in “general practice” (general or family practitioners, pediatricians and geriatricians), with a claim to a holistic approach to patients’ concerns. Many researchers assume that increasing specialization will continue to “technologize” and “compart- mentalize” doctor-patient interaction. As patients see increasing numbers of poorly coordinated specialists for their myriad problems, the need for “case- managing” generalists becomes ever more acute. HEALTH COMMUNICATION Health communication is the study and use of communication strategies to inform and influence individual and community decisions that enhance health. Communication between and among human beings is complex. It occurs at many levels simultaneously. Doctors, allied health professionals, public health communications experts grapple with how best to reach their audiences most effectively. Another concern is the need to inform whole populations about health emergencies, both on an immediate basis and into

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 111 the future. Much study has gone into the effort to make clear communica- tion, plain language, and visual communication as effective as possible, and this research continues. FOLLOWING ARE SOME IDEAS THAT EMERGE FROM THESE STUDIES: We must not blame the individual for not understanding information that has not been made clear to him or her. Everyone, no matter how educated, is at risk for misunderstanding health information if the issue is emotionally charged or complex. In almost all cases, physicians and other health profes- sionals, try to and believe they are communicating accurate information. In some cases, patients may believe they have understood directions, but may be embarrassed to ask questions to confirm their understanding. Health care organizations and their systems and procedures have a significant role to play in ensuring understanding in the health care setting. It is increasingly difficult for people to separate evidence- based information, especially online, from misleading ads and gimmicks. The communication of “risk” in an effective and fair way continues to be a challenge for both the provider and the patient.

CHAPTER 17 SOME GOALS OF A SUCCESSFUL HEALTH INFORMATION ENCOUNTER The provider offers a clear understanding of what to do to improve one’s health, why is it being done, and precisely how to do it. “This medicine will lower your blood pressure, which will help your heart. You need to take the white tablets with food. That’s one white tablet every day when you wake up with your breakfast, and one white tablet after dinner and before you go to sleep.” The provider needs to confirm the individual has a fundamental understanding of the information exchange, i.e. more than a nod of the head or an uh huh. Remember in school the teacher who said, “Any questions?” gave the class no time to think of a question to ask, and moved on? You will probably remember more warmly the doctor who took

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 113 the time to probe the question, “What do you think your risk is of having the complications I mentioned? What are you going to do with that infor- mation?” Using the “teach back” method, having the patient repeat the in- formation back to the provider, can help in ensuring there has been under- standing. Ideally, skills related to “teach to goal” help the patient improve his or her own self- management. Among the questions are: • “Are you receiving any medical care? If so, elaborate” • “Do you drink alcohol?” • “List the medicines you are using” • Take the medicine exactly as prescribed. If you don’t understand the directions, you need to ask the pharmacist and write down what is said. • Don’t skip doses. • Don’t stop taking the medicine because you feel better. Take all the doses. • Don’t take leftover medicine. • Don’t take someone else’s medicine. The NIH Office of Communications and Public Liaison (OCPL) and its 27 component public affairs offices work to connect research with the public. OCPL serves as liaison to the Department of Health and Human Services (HHS) on a number of issues related to health literacy. OCPL has established the NIH “Clear Communication” initiative that focuses on achieving two key objectives of health literacy: • Providing information in the form and with the content that is ac- cessible to specific audiences based on cultural competence, and • Incorporating plain language approaches and new technologies.

114 MOHAMADOU M. DIENE The first phase of the “Clear Communication” program involves build- ing upon sound research results provided by trans-NIH programs and ac- tivities. OCPL has created a number of resources to help trans-NIH com- municators and health communicators outside NIH reach audiences “where they are” and overcome barriers to health literacy. “Clear Communication” will serve as a resource to NIH staff, constitu- ency public health and advocacy organizations, and to the public engaged in communicating about health in the community, school, and other are- nas. The ultimate goal of the NIH “Clear Communication” program is to cultivate a growing health literacy movement by increasing information sharing of NIH educational products, research, lessons learned, and re- search in the area of health literacy. HEALTH LITERACY Health literacy is the degree to which individuals have the capacity to ob- tain, process, and understand basic health information and services needed to make appropriate health decisions. According to the Institute of Medi- cine, ninety million adult Americans have limited health literacy. Health literacy is a complex phenomenon that involves individuals, families, com- munities and systems. The concept of health literacy extends to the materials, environments, and challenges specifically associated with disease prevention and health promotion. Health literacy incorporates a range of abilities: reading, comprehending, and analyzing information, decoding instructions, symbols, charts, and di- agrams, weighing risks and benefits, and ultimately, making decisions and taking action. Twenty million American speak poor English, ten million speak none [Source: 2000 Census]. More than three hundred languages are spoken in the United States. Several HHS agencies, including the National Institutes of Health, the Agency for Healthcare Research and Quality, and the Centers for Disease

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 115 Control have joined together to support research efforts on health literacy concepts, theory and interventions as these relate to HHS public health pri- orities outlined in its HealthierUS and Healthy People 2010 initiatives. PLAIN LANGUAGE Plain language is a strategy for making written and oral information easier to understand. It is one important tool for improving health literacy. Key elements of Plain Language include: • Organizing information so that the most important points come first; • Breaking complex information into understandable chunks; • Using simple language and defining technical terms; and • Using the active voice. Part of the NIH mission is to reach all Americans with health infor- mation they can use, and NIH strives to communicate in a way that helps people to easily understand research results. The importance of Plain Lan- guage is underscored by government-wide directives requiring federal agen- cies to incorporate plain language elements in all documents, presentations, and electronic communications intended for the public and to avoid jargon and highly technical language. CLEAR AND SIMPLE For several years, a publication of the National Cancer Institute (NCI), “Clear & Simple: Developing Effective Print Materials for Low-Literate Readers,” served as a trans-NIH document dedicated to the subject of health literacy. Clear & Simple outlines a process for developing publications for people with limited-literacy skills and features proven principles and a discussion of real life issues that individuals developing low-literacy materials face. The NIH seeks to update and expand “Clear & Simple” for contemporary use and to

116 MOHAMADOU M. DIENE include it in the publication of a number of important resources and materials. COMMUNICATION AND OUTCOMES Two trends led to the rapid growth of research on doctor-patient commu- nication. The first trend was the interest of physicians and medical educa- tors in improving their ability to elicit patient histories and concerns, and inform patients of their conditions and treatment needs, and thereby achieve successful diagnosis and treatment compliance. Literally thousands of analyses of consultations have been done since the 1950s to develop methods to teach and improve physician communication skills. A second trend, the rise of health consumerism, has encouraged more contractual and conflictual relationships between the patient and the doctor. An increasingly well-educated population has begun to challenge medical authority and treat the doctor-patient relationship as another provider-con- sumer relationship rather than as a sacred trust requiring awe and deference. Health care marketing became a third major impetus for studies of doc- tor-patient communication, largely with the goal of identifying the kinds of interactions that improved patient satisfaction. Research found, not surpris- ingly, that people like to have doctors talk to them in an egalitarian way, listen, ask a lot of questions, answer a lot of questions, explain things in a simple way that the patient can understand, and allow patients to make decisions about their care. Researchers also began to demonstrate that different patterns of commu- nication have effects on the clinical outcomes of patient care. The kinds of medical care that patients find satisfying tends to alleviate psychosomatic symptoms and make patients more compliant with their treatment regi- mens, and thereby produce better clinical outcomes. Are patients swimming in a sea of health information? Or are they drowning in it? The rise of the internet along with thousands of health- oriented web sites, medical blogs and even doctor-based television and radio programs means that today’s patients have more opportunities than ever to

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 117 take charge of their medical care. Technological advances have vastly in- creased doctors’ diagnostic tools and treatments and have exponentially ex- panded the amount of information on just about every known disease. However, the daily bombardment of news reports and drug advertising of- fers little guidance on how to make sense of self-proclaimed medical break- throughs and claims of worrisome risks. And doctors, the people best equipped to guide us through these murky waters, are finding themselves with less time to spend with their patients. But patients have more than ever to gain by decoding the latest health news and researching their own medical care.

CHAPTER 18 DIRECT- TO-CONSUMER PHARMACEUTICAL ADVERTISING Direct-to-consumer pharmaceutical advertising (DTCPA) has grown rapidly during the past several decades and is now the most prominent type of health communication that the public encounters. The FDA regulates DTCPA, but critics say that the rules are too relaxed and inadequately enforced. Although only limited data exist, research suggests that DTCPA is both beneficial and detrimental to the public health. The number of arguments that favor or oppose DTCPA is fairly evenly balanced, and viewpoints presented by both sides can be sup- ported with evidence. Although there have been calls to ban or severely curtail consumer drug advertising, remedies to maximize the benefits and minimize

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 119 the risks of DTCPA are more frequently suggested. Channels used to distribute DTCPA most commonly include television, print—magazines, newspapers—radio, the internet, and other forms of mass media (billboards and direct mailings). Promotional brochures that are supplied to health care professionals to distribute to patients can also be considered DTCPA, even though they aren’t provided directly to the con- sumer by the manufacturer. Many marketers are also beginning to recognize the enormous potential of online DTCPA, which reaches millions of potential consumers globally. Though the vast majority of DTCPA budgets are still allocated to tradi- tional media (television, newspaper, magazine, radio), marketers are begin- ning to shift some of their promotional spending to digital promotion, such as product web sites, online display advertising, search engine marketing, social media campaigns, and mobile advertising. ARGUMENTS IN SUPPORT OF DTCA Although one might think that positions against DTCPA would predomi- nate, the debate is actually quite balanced. Opinions and data in support of DTCPA are as follows. DTCPA: Informs, educates, and empowers patients. Consumers can benefit from having access to multiple information sources about drugs and other treat- ment options rather than relying solely on health care providers. The internet, including online direct to consumer ads, has become an increasingly popular source of medical information for consumers. Online DTCPA or other pharmaceutical company–sponsored web sites can also be used to inform patients by communicating safety risks and public health information, public and private health warnings about topics such as online drug purchasing, and adverse reactions.

120 MOHAMADOU M. DIENE Encourages patients to contact a clinician. The effect of DTCPA in in- creasing patient contact with health care providers could also be beneficial by promoting dialogue about lifestyle changes that improve patients’ health, whether or not a drug is prescribed. Promotes patient dialogue with health care providers. Most health care professionals seem to agree that DTCPA is beneficial because it promotes dia- logue with patients. Consumer drug advertising leads to better discussion with patients, and helps patients ask more thoughtful questions. DTCPA may also benefit patients by promoting heightened awareness and detection of adverse reactions, which also may lead to a discussion with a health care provider. There is evidence that dialogue inspired by DTCPA doesn’t always ben- efit the manufacturer of the advertised drug, because physicians do not usu- ally prescribe a medication simply because it is requested by a patient. Doc- tors usually prescribed requested drugs only for patients who had been ad- vised by other health care providers, such as pharmacists and other physi- cians, not by the mass media. Strengthens a patient’s relationship with a clinician. Studies generally agree that participation of an informed patient in clinical decision-making benefits the patient–clinician relationship. DTCPA improves doctor-patient communication, and encourages patients to seek the advice of their doctor, whom they described as their most preferred and trusted source of information. Encourages patient compliance. There is a significant improvement in ad- herence that occurs among patients exposed to DTCPA. This increased compliance is believed to be due to drug ads serving as a reminder about a patient’s medical conditions and prescriptions. DTCPA is also thought to reinforce physician recommendations and make patients more likely to fol- low treatment instructions. Reduces under-diagnosis and under-treatment of conditions. DTCPA has

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 121 been credited with decreasing the under-diagnosis and under-treatment of medical conditions. Drug ads enhance patient perceptions about conditions that could be medically treatable and encourage dialogue with health care providers. Removes the stigma associated with certain diseases. Consumer drug ad- vertising for health problems that could be embarrassing to a patient, such as depression or erectile dysfunction (ED), can reduce the stigma associated with these conditions. For example, an advertising campaign for finasteride (Proscar, Merck), a treatment for benign prostatic hyperplasia, is widely re- garded as having successfully raised awareness of a medical condition that men had been reluctant to discuss with their doctors. Encourages product competition and lower prices. DTCPA is often as- sumed to be a major driver of rising pharmaceutical costs; however, eco- nomic theory and evidence suggest that pharmaceutical prices are instead largely influenced by consumer, physician, and payer perceptions of product value rather than advertising costs. Consumer drug ads may spur manufac- turer price increases because of demand, but the evidence for this is mixed. Supporters of DTCPA also claim that drug advertisements stimulate in- creased competition, which leads to lower prescription drug prices. They argue that DTCPA also encourages early pharmacological management, re- sulting in cost-savings from avoiding more expensive surgical interventions. Unfortunately, these claims are not verifiable, because data available regard- ing the effect of DTCPA on drug costs are limited. ARGUMENTS OPPOSING DIRECT-TO-CONSUMER ADS Critics also commonly voice arguments against DTCPA. Opinions and data opposing DTCPA are as follows. DTCPA: Misinforms patients. Although DTC advertising may educate patients, it also has the ability to misinform them. A common complaint is that

122 MOHAMADOU M. DIENE DTCPA omits important information. DTCPA also tends to suggest that health improvement comes from a medication, perhaps in combination with healthy activities, but never from behavior modification alone, such as good diet and exercise. Patients may also lack the skills needed to evaluate comprehensive med- ical information, even if it has been provided. This is because the content in DTCPA often exceeds the eighth-grade reading level, which is typically recommended for information distributed to the general public. Paradoxi- cally, the inclusion of information about risks and adverse events in DTCPA may also promote an unnecessary fear of side effects. Overemphasizes drug benefits. Opponents to DTCPA warn that ads for drugs overemphasize potential benefits. In support of this view, content an- alytic studies have found that most DTC ads emphasize drug benefits over risks. Physicians also report that most patients who initiate a request for a new drug understand the benefits much better than they understand its risks. Promotes new drugs before safety profiles are fully known. New drugs have been associated with previously unknown serious adverse events after they have been introduced to the market and a substantial amount of use has occurred. Manufactures disease and encourages drug over-utilization. DTCPA has been criticized as contributing to the “medicalization” of natural condi- tions, cosmetic issues, or trivial ailments, resulting in an overmedicated so- ciety. For this reason, some commentators have even referred to DTCPA as a threat to public health. Leads to inappropriate prescribing. If a patient’s request for an advertised drug is clinically inappropriate and the health care provider is unable or un- willing to correct the patient’s perception that it is a good choice, this situa- tion may lead to unnecessary or harmful prescribing. An additional problem

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 123 mentioned by critics is that patients may withhold information to fit a par- ticular profile that they saw in DTC ads in an attempt to get the doctor to prescribe a drug they want but that might not be appropriate for them. Strains relationships with health care providers. DTCPA is often criticized for its potential impact on the patient–clinician relationship. Drug ads can have an influence in diminishing a patient’s trust in their health care pro- vider’s clinical decisions. Clinicians may also find themselves challenged with increased work and frustration when a patient questions their clinical author- ity with a piece of “evidence” obtained from an advertisement or web site. Wastes appointment time. Supporters of DTCPA argue that doctors should act as learned intermediaries and should educate consumers about prescription drug indications, benefits, and alternatives. However, many physicians oppose DTCPA because they feel it is difficult and time- con- suming to have to convince patients that a requested drug is inappropriate. Is not rigorously regulated. Some critics argue that FDA regulations con- cerning DTCPA are too relaxed. They complain that FDA rules don’t pre- vent DTCPA violations, because drug manufacturers are held liable only after a violation has been identified. Increases costs. Another common complaint is that manufacturers often use DTCPA to promote expensive “me-too” or “copycat” drugs that might not offer any significant benefits over older and cheaper medications. Crit- ics say that cost information that could benefit consumers is rarely included in DTCPA. They suggest that, at a minimum, ads should note whether generic drugs that might be a less expensive alternative are available. Patients also don’t know that they might not be able to obtain a new drug that they saw advertised, because it costs ten times more than an older, equally effec- tive drug and is not on formulary.

CHAPTER 19 CULTURAL COMPETENCE Cultural Competence is a strategy that enables organizations to work effectively in cross-cultural situations. Cultural competence bene- fits consumers, stakeholders, and communities. Because a number of elements can influence health communication—including behaviors, language, customs, beliefs, and perspectives—cultural competence is also critical for achieving accuracy in medical research. The NIH funds and works with researchers nationwide for the development and dissemination of resources designed to enhance cultural competence in health care systems. WHAT IS CULTURAL COMPETENCE? Culture is often described as the combination of a body of knowledge, a body of belief and a body of behavior. It involves a number of elements,

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 125 including personal identification, language, thoughts, communications, ac- tions, customs, beliefs, values, and institutions that are often specific to eth- nic, racial, religious, geographic, or social groups. For the provider of health information or health care, these elements influence beliefs and belief sys- tems surrounding health, healing, wellness, illness, disease, and delivery of health services. The concept of cultural competence has a positive effect on patient care delivery by enabling providers to deliver services that are re- spectful of and responsive to the health beliefs, practices and cultural and linguistic needs of diverse patients. WHY IS CULTURAL COMPETENCE IMPORTANT? Cultural competence is critical to reducing health disparities and improving access to high-quality health care, health care that is respectful of and re- sponsive to the needs of a diverse patient population. When developed and implemented as a framework, cultural competence enables systems, agen- cies, and groups of professionals to function effectively to understand the needs of groups accessing health information and health care—or partici- pating in research-in an inclusive partnership where the provider and the user of the information meet on common ground. WHAT IS NIH DOING TO PROMOTE C U L T U RAL COMPETENCE? The NIH recognizes the challenge presented by the health care needs of a growing number of diverse racial and ethnic communities and linguistic groups, each with its own cultural traits and health challenges. The NIH recognizes the need to apply research advances in such a way as to ensure improved health for all Americans. Current efforts through the NIH re- search and that done by other groups and agencies contribute to identify further potential links between reductions in health disparities and appro- priate delivery of health information and health care. Cultural competence benefits consumers, stakeholders, and communities and supports positive

126 MOHAMADOU M. DIENE health outcomes. Developing and implementing a framework of cultural competence in health systems is an extended process that ultimately serves to reduce health disparities and improve access to high-quality health care. RACIAL AND ETHNIC DISPARITIES IN HEALTH CARE The United States of America draw strength and power from its cultural diversity. But the full potential of our diverse, multicultural society cannot be realized until all Americans, including racial and ethnic minorities, have access to quality health care that meet their needs. The Institute of Medicine defines healthcare quality as the extent to which health services provided to individuals and patient populations improve desired health outcomes. The care should be based on the strongest clinical evidence and provided in a technically and culturally competent manner with good communication and shared de- cision making. It is now well documented that striking disparities exist for racial and ethnic minorities in health care services. Racial and ethnic minor- ities have less access to health care services than do whites. They are less likely to received needed care. When they do receive care, it is likely to be of poor quality. These disparities have powerful consequences for minority groups, for the community, and for society as a whole. Racial and ethnic minorities bear a greater burden from unmet health care needs and thus suffer a greater loss to their overall health and productivity. Taken more broadly, disparities also originate from minorities’ historical and present day struggles with racism and discrimination which affect their mental and phys- ical health and contribute to their lower economic, educational, social and political status. The cumulative effect and interplay of all these barriers, not any single one alone, is likely responsible for the health disparities. Also these barriers operate to different degrees for different individuals and groups de- pending on life circumstances, gender, age, sexual orientation, or spiritual and religious beliefs. However there is no uniform racial or ethnic group, white or non- white, but rather a highly heterogeneous, and diverse mix including im- migrants, refugees, and Americans of all ages with different histories, languages,

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 127 spiritual and religious practices, demographic patterns and cultures. The four most recognized races in the United States are African Ameri- cans, (Blacks), American Indians and Alaskan Natives, Asians Americans and Pacific Islanders, and White Americans (Whites). Hispanic American (Latino) is an ethnicity and may apply to a person of any race. The term “racial and ethnic minorities” refers to people who identify themselves as African Americans, American Indians and Alaska Natives, Asian Americans and Pacific Islanders, and Hispanic Americans. “Minor- ity” implies the groups’ limited political, economic, and social power as well as their unequal access to opportunities, social rewards, and social status. The minority groups represent about thirty percent of the US population in 2000 and are projected to account for almost 40 percent by 2025. This demographic increase in minority populations projected over the next two decades is expected to accompany continuing economic gaps between rich and poor. Income and socio-economic status is relevant to health care be- cause of the strong correlation between lower income and higher rates of health problems and disorders, and because of the correlation between health insurance and the ability to pay for health care services. Although the term disparities is often interpreted to mean racial or ethnic disparities, many dimensions of disparity exist in the United States, partic- ularly in health. If a health outcome is seen to a greater or lesser extent be- tween populations, there is disparity. Again, race or ethnicity, sex, sexual identity, age, disability, socioeconomic status, and geographic location all contribute to an individual’s ability to achieve good health. It is important to recognize the impact that social determinants have on health outcomes of specific populations. Healthy People strives to improve the health of all groups. Achieving health equity requires valuing everyone equally with fo- cused and ongoing societal efforts to address avoidable inequalities, historical and contemporary injustices, and the elimination of health care disparities. Healthy People 2020 defines a health disparity as “a particular type of health difference that is closely linked with social, economic, and/or envi- ronmental disadvantage. Health disparities adversely affect groups of people

128 MOHAMADOU M. DIENE who have systematically experienced greater obstacles to health based on their racial or ethnic group, religion, socioeconomic status, gender, age, mental health, cognitive, sensory, or physical disability, sexual orientation, or gender identity, geographic location, or other characteristics historically linked to dis- crimination or exclusion.” Over the years, efforts to eliminate disparities and achieve health equity have focused primarily on diseases or illnesses and on health care services. However, the absence of disease does not automatically equate to good health. The World Health Organization defines health as a “State of com- plete physical, mental, and social well -being, and not merely the absence of disease or infirmity.” The 2001 report from the Institute of Medicine (IOM), Crossing the Quality Chasm, stressed the importance of equity in care as one of the six pillars of quality health care, along with efficiency, effectiveness, safety, timeliness, and patient-centeredness. Equity in care can be defined as provision of care that does not differ by geographic location, socioeconomic status, gender, ethnicity, and other pa- tient characteristics. The IOM followed its 2001 report with another report in 2002, Unequal Treatment, which found that multiple factors may con- tribute to disparities in health care. There is therefore no single solution for addressing disparities in health care. The authors of the report offered mul- tiple recommendations for reducing disparities by increasing awareness of the issue, data collection, and research. According to the 2010 National Healthcare Disparities Report (NHDR) released by the Agency for Healthcare Research and Quality (AHRQ), ra- cial and ethnic minorities continue to receive lower quality of care, as meas- ured by performance on core quality measures. Also, in the 2009 NHDR, AHRQ and the Department of Health and Human Services noted three major implementation strategies to accelerate the reduction of health care disparities. (1) Train health care personnel to deliver culturally and linguistically

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 129 competent care for diverse populations (2) Raise awareness of disparities using research and data (3) Form partnerships to identify and test solutions For years, hospital leaders have realized that reducing disparities in care is the right thing to do. Today, it has become a necessary component of qual- ity and, as such, will have an increasingly greater impact on reimbursement. Effectively addressing the issue of disparities in health care will require a two-fold approach from health care leaders. The first step—collecting data on patients’ race, ethnicity, and primary language—is focused on gaining a complete understanding of the community served by the hospital and the characteristics of patient population. Data collection, if done properly, can facilitate the second step, which involves analyzing quality-of-care and health outcomes data using patient demographics to specifically identify disparities and implement actions to reduce such disparities. Hospitals that currently collect data on patients’ race, ethnicity, and primary language en- counter barriers in using the data to develop evidence-based strategies for improving health equity.

CHAPTER 20 DETERMINANTS OF HEALTH What makes some people healthy and others unhealthy? How can we create a society in which everyone has a chance to live a long, healthy life? In December 2010, the Department of Health and Human Services launched Healthy People 2020, which has four overarching goals: • Attain high-quality, longer lives free of preventable disease, disabil- ity, injury, and premature death; • Achieve health equity, eliminate disparities, and improve the health of all groups; • Create social and physical environments that promote good health for all; and

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 131 • Promote quality of life, healthy development, and healthy behav- iors across all life stages. Healthy People 2020 is exploring these questions by developing objec- tives that address the relationship between health status and biology, indi- vidual behavior, health services, social factors, and policies. It also put em- phasis on an ecological approach to disease prevention and health promo- tion. An ecological approach focuses on both individual-level and popula- tion-level determinants of health and interventions. ABOUT DETERMINANTS OF HEALTH The range of personal, social, economic, and environmental factors that in- fluence health status are known as determinants of health. Determinants of health fall under several broad categories: policy mak- ing, social factors, health services, individual behavior, biology and genetics. It is the interrelationships among these factors that determine individual and population health. Because of this, interventions that target multiple determinants of health are most likely to be effective. Determinants of health reach beyond the boundaries of traditional health care and public health sectors; sectors such as education, housing, transportation, agriculture, and environment can be important allies in improving population health. Policy making Policies at the local, state, and federal level affect individual and population health. Increasing taxes on tobacco sales, for example, can improve popula- tion health by reducing the number of people using tobacco products. Some policies affect entire populations over extended periods of time while simultaneously helping to change individual behavior. For example, the 1966 Highway Safety Act and the National Traffic and Motor Vehicle Safety Act authorized the Federal Government to set and regulate standards for motor vehicles and highways. This led to an increase in safety standards

132 MOHAMADOU M. DIENE for cars, including seat belts, which in turn reduced rates of injuries and deaths from motor vehicle accidents. Social Factors Social determinants of health reflect the social factors and physical condi- tions of the environment in which people are born, live, learn, play, work, and age. Also known as social and physical determinants of health, they impact a wide range of health, functioning, and quality-of-life outcomes. Examples of social determinants include: • Availability of resources to meet daily needs, such as educational and job opportunities, living wages, or healthful foods • Social norms and attitudes, such as discrimination • Exposure to crime, violence, and social disorder, such as the pres- ence of trash • Social support and social interactions • Exposure to mass media and emerging technologies, such as the internet or cell phones • Socioeconomic conditions, such as concentrated poverty • Quality schools • Transportation options • Public safety • Residential segregation Examples of physical determinants include: • Natural environment, such as plants, weather, or climate change • Built environment, such as buildings or transportation • Worksites, schools, and recreational settings • Housing, homes, and neighborhoods • Exposure to toxic substances and other physical hazards • Physical barriers, especially for people with disabilities

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 133 • Aesthetic elements, such as good lighting, trees, or benches Poor health outcomes are often made worse by the interaction between individuals and their social and physical environment. For example, mil- lions of people in the United States live in places that have unhealthy levels of ozone or other air pollutants. In counties where ozone pollution is high, there is often a higher prevalence of asthma in both adults and children compared with state and national averages. Poor air quality can worsen asthma symptoms, especially in children. Health Services Both access to health services and the quality of health services can impact health. Healthy People 2020 directly addresses access to health services as a topic area and incorporates quality of health services throughout a number of topic areas. Lack of access, or limited access to health services greatly impacts an in- dividual’s health status. For example, when individuals do not have health insurance, they are less likely to participate in preventive care and are more likely to delay medical treatment. Barriers to accessing health services include: • Lack of availability • High cost • Lack of insurance coverage • Limited language access These barriers to accessing health services lead to: • Unmet health needs • Delays in receiving appropriate care • Inability to get preventive services • Hospitalizations that could have been prevented

134 MOHAMADOU M. DIENE Individual Behavior Individual behavior also plays a role in health outcomes. For example, if an individual quits smoking, his or her risk of developing heart disease is greatly reduced. Many public health and health care interventions focus on changing in- dividual behaviors such as substance abuse, diet, and physical activity. Pos- itive changes in individual behavior can reduce the rates of chronic disease in this country. Examples of individual behavior determinants of health include: • Diet • Physical activity • Alcohol, cigarette, and other drug use • Hand washing Biology and Genetics Some biological and genetic factors affect specific populations more than others. For example, older adults are biologically prone to being in poorer health than adolescents due to the physical and cognitive effects of aging. Sickle cell disease is a common example of a genetic determinant of health. Sickle cell is a condition that people inherit when both parents carry the gene for sickle cell. The gene is most common in people with ancestry from West African countries, Mediterranean countries, South or Central American countries, Caribbean islands, India, and Saudi Arabia. Examples of biological and genetic social determinants of health include: • Age • Sex • HIV status • Inherited conditions, such as sickle-cell anemia, hemophilia, and cystic fibrosis

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 135 • Carrying the BRCA1 or BRCA2 gene, which increases risk for breast and ovarian cancer • Family history of heart disease The following chapters give you tips on how to make the most of your doctor appointment in special circumstances.

CHAPTER 21 HOW TO GET THE MOST OUT OF YOUR OB/GYN APPOINTMENT Unless you are having a baby, seeing an OB/GYN often makes women feel very nervous. This can lead to forgetting questions, forgetting important information about your condition and leav- ing feeling dissatisfied. In order to get the most out of your appointment, here are some simple tips: COME PREPARED Bring a list of your medications; this can help your OB/GYN doctor a lot and also your problem may be related to some medication you are taking- for example, blood thinners can cause heavy menstrual periods.

MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT 137 Know your family history. Things that are important for your OB/GYN to know include family members with blood clots, recurrent miscarriages, family members with cancer of the breast, ovary, uterus, or colon. It is also important to know the age they were diagnosed. Bring a list of questions. The more you ask, the more you will know. When you, as a patient are well informed, your doctor can help you make the right treatment plan for you. Start with what is important for you since there may not be enough time to go over everything in one appointment. CHECK YOUR INHIBITIONS AT THE DOOR It is important that you are open and honest so that your OB/GYN can make sure that he or she understands what is going on to come up with the right diagnosis. It is very likely that you will be asked personal questions related to your sexual activity, pregnancy history, sexually transmitted dis- eases. If you don’t want someone to know this information, ask them to wait in the waiting room. DO RESEARCH Some websites have a wide range of health problems that you can download or print. Health.nih.gov is a great resource and contains information that is reviewed by healthcare providers to ensure that it is accurate and up-to-date. BE YOUR OWN ADVOCATE It is your health and your decision. If you don’t feel comfortable with a treatment option, let your OB/GYN know. There may be often multiple options available. If you have concerns or questions, let him or her know right away. Don’t wait until your follow up visit in three months. Don’t be afraid to find a new provider. Sometimes you just don’t “click” with some- one and that is okay. This is a very sensitive area and you need to be com- fortable with your provider.

138 MOHAMADOU M. DIENE Here are 5 tips to improve your OB/GYN visits • Switch to a provider you like. • Make it an annual event. Once you book your appointment come prepared. Know when was your last period, your medications, your family history… • Know your Pap. This test is especially relevant for young and sex- ually active women who are at risk of contracting HPV, the virus that can cause cervical cancer. Avoid having sex the night before your exam. Having vaginal intercourse may irritate and inflame the cells that line your cervix, which makes the Pap smear harder for labs to interpret. • Be open about your bedroom behavior, mostly when having un- protected sex so that your doctor knows he or she can screen for sexually transmitted diseases like chlamydia and gonorrhea which often don’t have symptoms. These infections are easily treated with antibiotics, but should be detected as early as possible because they may cause infertility over time. Lastly follow up on any tests that your doctor performs. Once again you can’t assume that no news is good news. Some busy offices sometimes misplace or forget to call about positive tests results. • Bring up the tough stuff and your biggest concerns first, at the very start of the appointment to make sure that you have adequate time to address what’s most important to you. Make a nerve-racking conversation easier by starting out with “This is a bit embarrassing for me, but….,” or “I’d really like to talk about something, but it’s uncomfortable for me”. These phrases signal to your doctor that the discussion is emotional.