Presenter

1. Patient-Provider Communication and the Impact on Medical Outcomes for Patients with HIV II: Strategies to Improve Encounters Based on Patient/Provider ExperiencesPresented: April 19, 2012Updated: August 13, 2013

2. Presenter E. Blaine Parrish, PhD Vice-Chair for Administration & Assistant Professor Department of Health Policy Assistant Professor and Interim Director, COPC Department of Prevention and Community Health Director, Graduate Certificate for Community-Based Program Management School of Public Health and Health Services The George Washington University 2175 K Street, NW Suite 722 Washington, DC 20036 (202) 994-2441 or blainep@gwu.edu

3. Learning Objectives • Identify barriers to effective patient-provider communication • Gain new techniques and tools to facilitate effective patient-provider communication. • Increase understanding of patient-provider communication and the impact on medical outcomes for patients with HIV. • Learn specific strategies to improve encounters based on patient-provider experiences

4. Barriers to Effective Communication • Providers identify the top communication barriers with patients include: • Patient does not follow through with treatment or make lifestyle changes • Insufficient time • Difficulty getting patient to understand diagnosis • Interpreter does not adequately translate • Patient presents too many problems

5. Barriers to Effective Communication • Patient provides inconsistent information • Patient is uninterested in self-care or health maintenance • Difficulty establishing rapport with patient • Difficulty reconciling patient’s self-diagnosis with physician’s diagnosis • Patient does not want to participate in a partnership with physician

6. Barriers to Effective Communication • Patient’s cultural beliefs about illness interfere with diagnosis and treatment • Patient does not trust the physician • Patient uses culturally based alternative therapies that the physician is unfamiliar with or disagrees with.

7. Examples • "I think a lot of times it's just a culture. And a lot of these people [doctors] might be knowledgeable, but they're not knowledgeable of the people they're dealing with. So they're generally mechanical. They know how to do this, they know how to do that, but they don't know how to deal with you. They don't know.” • "I was talking to her [the doctor] about the symptoms I was having. And she asked me when was the last time I had anal sex? And I told her, like, whenever it was. And she's like, 'Well, you know, the anus really isn't made for that."' • "I just feel more comfortable talking to a man. I'm a man. I feel more comfortable talking to a man about my parts and all that, because he has the same parts.”

8. Examples • Make me feel that it's a positive enough process that I will work towards doing my part in it. Because if I've been turned off, then I don't wanna hear anything, and I will probably act in a manner that's not in my own self-interest, because I've just been turned off by the whole experience. Whereas if I feel that someone else cares, that's the kind of encouragement for me to really invest in myself better.” • "There are times-rather than have a foreign doctor or healthcare provider-I will walk out and do without.“ • "With the heterosexual male patients that my doctors have, I hear them talking about girlfriends and what not. We don't have that relationship. He don't talk about what I do, or what my dates are. Its always come in, breathe in, breathe out, and out the door."

9. Current Strategies to Address Communication Barriers

10. Interpersonal Communication Strategy (IPC) • The patient discloses enough information about the illness to lead to an accurate diagnosis; • The provider, in consultation with the client, selects a medically appropriate treatment acceptable to the client; • The client understands her condition and the prescribed treatment regimen; • The provider and the client establish a positive rapport; and • The client and the provider are both committed to fulfilling their responsibilities during treatment and follow-up care

11. Example of IPC in Action “Good morning, Mr. B, how may I help you?” “I have been coughing for the past 3 weeks.” “How does it make you feel? How are your other activities affected?” Dr. A asks, inviting Mr. B to talk about his feelings. Mr. B discusses his condition and how he is worried about not being able to provide for his family once he falls seriously ill. “I understand how you feel, as I have treated many patients before, and most people in your situation worry about the same thing,” Dr. A says, showing that he understands and sympathizes with Mr. B. “I’ve been feeling depressed lately.” “It seems that you have other things on your mind,” Dr. A invites Mr. B to elaborate further. “I tested positive for HIV a few weeks ago,” Mr. B said, his head hanging low. “I’m going to try my best to make you feel better,” Dr. A expresses his support. He reassures Mr. B, “You may feel weak and tired now, but with some medication, you can still live and be healthy for years.”

12. Example Throughout the encounter, Dr. A gives Mr. B his full attention, speaking in an agreeable tone of voice, in a manner and attitude that are appropriate and friendly enough so that the client will want to continue to talk. He expresses a genuine concern for the patient’s feelings, reassuring him that things will be fine. Aware that HIV/AIDS sufferers bear a lot of social stigma, Dr. A constantly expresses his respect for Mr. B by being courteous, and smiling. He never interrupts Mr. B in mid-sentence, and doesn’t answer the telephone during the meeting. “Tell me about any symptoms or discomfort you’ve been feeling,” Dr. A encourages further dialogue. “There is blood in my spit.” “Tell me more.” Instead of jumping to conclusions which could lead to diagnostic error, Dr. A probes further, listening to Mr. B’s full story and delving deeper into the nature of his health problem. Sometimes, Dr. A even asks Mr. B for his opinion in order to evaluate Mr.B’s understanding of his own illness. Dr. A concludes, “I think you may have TB. You will need to be tested.” Then Dr. A asks Mr. B to describe his understanding of TB and corrects any misconceptions. Throughout the discussion, instead of medical jargon, Dr. A uses simple language, to convey his advice to Mr.B. Mr. B leaves the meeting with newfound hope and a sense of peace and reassurance.

13. Shared Decision-Making Strategy (SDM) • SDM is an approach that values the contribution of the patient and provider equally when it comes to making decisions about medical treatment, including to: • Develop a partnership with the patient. • Establish or review the patient’s preference for information, e.g. amount and format. • Establish or review the patient’s preferences for role in decision-making. • Ascertain and respond to patients’ ideas, concerns, and expectations.

14. Shared Decision-Making Strategy (SDM) • Identify choices and evaluate the research evidence in relation to the individual patient. • Present (or direct to) evidence, taking into account the above steps, and help the patient reflect upon and assess the impact of alternative decisions with regard to their values and lifestyles. • Make or negotiate a decision in partnership, manage conflict. • Agree upon an action plan and complete arrangements for follow-up.

15. Example • Mrs. J's story: Mrs. J. has knee pain and difficulty walking. Her doctor has told her she has osteoarthritis. She has been given information about her condition, her treatment choices, and their benefits and risks. • But…: She lives alone and is a little afraid to have surgery and face recovery on her own, but she can't walk much and is gaining weight because of it. She wonders what other people in her situation have done. • So…: She stops by the Center for Shared Decision Making to borrow a video on knee osteoarthritis. The Decision Aid Library has videos and other resources. • Then…: After watching the video and learning what several people in the same situation chose and what helped to make their decisions, she returns the video and spends some time talking with our staff about how hard this decision is for her. The center's nurse uses a Health Care Decision Guide worksheet to help Mrs. J. look at the pros and cons of each choice and figure out which ones are most important to her. • Finally…: Mrs. J. returns to her doctor for a follow-up appointment, feeling better informed and prepared to share in this decision.

16. Hearing from the HIV Community

17. Patient #1: Language Barrier • Hernando • Newly diagnosed as HIV positive • US Citizen born in Peru • Spanish speaker (first language) • English Speaker • Alcoholic

18. Issues in the Encounter(s)/in the Community • Acceptance as a Latino gay male • Addressing alcoholism • Unwilling to share in decisions • Refusal to follow treatment instructions

19. Hearing from the HIV Provider Community

20. HIV disproportionately affects certain populations. Men who have sex with men (MSM), blacks/African Americans, and Hispanic/Latinos are the groups most affected by HIV infection. • MSM represent approximately 2% of the US population. However, MSM have an HIV diagnosis rate more than 44 times that of other men, and more than 40 times that of women [8,b]. • MSM account for more than half of all new HIV infections in the United States and nearly 30,000 MSM are newly infected with HIV each year [2]. Provider: Treating a Diverse HIV Community • Jose Latorre, APRNOptimus Health Care982-988 East Main StreetBridgeport, CT 06608Phone: (203) 696-3260Fax: (203) 696-3273jlatorre@opthc.org

21. HIV disproportionately affects certain populations. Men who have sex with men (MSM), blacks/African Americans, and Hispanic/Latinos are the groups most affected by HIV infection. • MSM represent approximately 2% of the US population. However, MSM have an HIV diagnosis rate more than 44 times that of other men, and more than 40 times that of women [8,b]. • MSM account for more than half of all new HIV infections in the United States and nearly 30,000 MSM are newly infected with HIV each year [2]. Issues in the Encounter(s)/in the Community • Finding Common Ground • Getting the most out of the patient-provider encounters • Meeting patients where they are • Priority Setting / Barriers • Perception versus Reality • Social • Medical • Substance Abuse/Pain Management • Seeking Behaviors • Hormone Replacement Therapy • Secondary Sexual Characteristics

22. HIV disproportionately affects certain populations. Men who have sex with men (MSM), blacks/African Americans, and Hispanic/Latinos are the groups most affected by HIV infection. • MSM represent approximately 2% of the US population. However, MSM have an HIV diagnosis rate more than 44 times that of other men, and more than 40 times that of women [8,b]. • MSM account for more than half of all new HIV infections in the United States and nearly 30,000 MSM are newly infected with HIV each year [2]. Patient Profile and Encounter • Victor • 47 year old Hispanic Male • HIV positive for 10 years • Stable on HAART • Transferring from NYC • Prescribed Percocet for chronic lower back pain • No records • My priority: Continue care to fully suppress HIV virus • His priority: Pain management

23. HIV disproportionately affects certain populations. Men who have sex with men (MSM), blacks/African Americans, and Hispanic/Latinos are the groups most affected by HIV infection. • MSM represent approximately 2% of the US population. However, MSM have an HIV diagnosis rate more than 44 times that of other men, and more than 40 times that of women [8,b]. • MSM account for more than half of all new HIV infections in the United States and nearly 30,000 MSM are newly infected with HIV each year [2]. Patient Profile and Encounter • Mike • 31 year old female to male transgender • HIV positive for 7 years • Not on HAART • Fairly advanced HIV – previously failed medication attempts • My priority: Start HAART • His priority: Hormone therapy

24. Determining Opportunities for Communities to Address Communication Barriers

25. Opportunities through Planning • Planning Councils for Ryan White CARE Act • Determine needs of the community • Establish priorities for the RWCA funding in the community • Develop a comprehensive plan for service delivery • Establish methods for obtaining input on community needs and priorities (from patients and from providers) • Community-Based Organizations (Non-profits) • Implement programs designed to benefit individuals with HIV • Develop partnerships with medical providers/social service providers • Develop a strategic plan for the organization, which includes program priorities • Academic Institutions • Schools of Medicine, Nursing, Counseling, Public Health, and others who train individuals who care for people living with HIV/AIDS • Community Planning Groups (CPG) • Allocate funding for HIV prevention • Develop a community plan for the prevention of HIV • Training of individuals to serve at-risk HIV patients (including providers)

26. Opportunities through Programs • UCSD PACE Program • The Physician-Patient Communication Program is an intensive one-day fast-paced interactive program that assists the professional in enhancing his or her communication skills. • “Clinicians may not have learned these techniques during their medical training – some being developed since the clinician was trained.” • American Academy on Communication in Healthcare • Focusing on strengths, resources and needs of patients, clinicians and other professionals - both as unique individuals and in relationships to one another. • Developing skills that integrate biological, psychosocial and social domains. • Applying existing scholarship from multiple disciplines and developing new knowledge through research. • Promoting collaborative relationships between clinicians and patients, teachers and learners, and other involved professionals. • Incorporating core values of respect, empathy and genuineness in human relationships and the importance of self-awareness in all activities.

27. Opportunities through Advocacy • National Association of People With AIDS (NAPWA) • Advocates for the lives and dignity of all people living with HIV/AIDS, especially the more than a million Americans who live with it today. • National Minority AIDS Council (NMAC) • Develops leadership in communities of color to end the HIV/AIDS epidemic and other activities, including: a public policy education program, national and regional training conferences, and a treatment and research program. • The Body Pro • HIV Resource for Health Professionals • Provides patients and providers the latest in best practices and quality of care programs • National Alliance of State and Territorial AIDS Directors (NASTAD) • Represents the nation's chief state health agency staff who have programmatic responsibility for administering HIV/AIDS and viral hepatitis healthcare, prevention, education, and supportive service programs funded by state and federal governments. • Communities Advocating Emergency AIDS Relief (CAEAR) • Advocates for federal policy, legislation, regulations, and appropriations to meet the care, treatment, support and prevention needs of people living with HIV/AIDS and the organizations that serve them, focusing on health care reform and the evolving role of the Ryan White Program.

28. Opportunities through Providers • AIDS Healthcare Foundation • Provides medical care • Engages in training programs • Encourages patient self-advocacy • Whitman-Walker Clinic • Coordinates clinical care • “Red carpet service” • Transgender Health Empowerment • Experienced working with governmental entities to promote funding for and competencies in medical care • Recognizes the need to tell the “transgender story” so providers have resources for training and understanding • Tarrant County Health Department • Influence over area service providers to encourage and/or require competency in patient/provider communication • Offer opportunities for collaboration between medical and social service organizations

29. Patient Centered Medical Homes

30. PCMH as a Model for Improving Health Outcomes • Patient Centered Medical Home (PCMH) is a care delivery model designed to strengthen the physician-patient relationship by moving from episodic care (reactive) to coordinated care and an ongoing relationship with a physician-led "care team" (proactive). • PCMH, the care team is responsible for providing all the patient's health care needs, including appropriate referral to other qualified physicians as needed. Emphasis is placed on open scheduling, expanded hours, and strong communication between patients, physicians and staff. Technology plays a key role in achievement.

31. Use of PCMH to Improve HIV Care • Personal physician - each patient has an ongoing relationship with a personal physician trained to provide first contact, continuous and comprehensive care. • Physician directed medical practice – the personal physician leads a team of individuals at the practice level who collectively take responsibility for the ongoing care of patients. • Whole person orientation – the personal physician is responsible for providing for all the patient’s health care needs or taking responsibility for appropriately arranging care with other qualified professionals. This includes care for all stages of life; acute care; chronic care; preventive services; and end of life care. • Care is coordinatedand/or integrated across all elements of the complex health care system (e.g., subspecialty care, hospitals, home health agencies, nursing homes) and the patient’s community (e.g., family, public and private community-based services). Care is facilitated by registries, information technology, health information exchange and other means to assure that patients get the indicated care when and where they need and want it in a culturally and linguistically appropriate manner.

32. Use of PCMH to Improve HIV Care • Quality and safety are hallmarks of the medical home: • Practices advocate for their patients to support the attainment of optimal, patient-centered outcomes that are defined by a care planning process driven by a compassionate, robust partnership between physicians, patients, and the patient’s family. • Evidence-based medicine and clinical decision-support tools guide decision making • Physicians in the practice accept accountability for continuous quality improvement through voluntary engagement in performance measurement and improvement. • Patients actively participate in decision-making andfeedback is sought to ensure patients’ expectations are being met • Patients and families participate in quality improvement activities at the practice level. • Enhanced access to care is available through systems such as open scheduling, expanded hours and new options for communication between patients, their personal physician, and practice staff. • Payment appropriately recognizes the added value provided to patients who have a patient-centered medical home. The payment structure should be based on the following framework:

33. Use of PCMH to Improve HIV Care • The Obama Administration identified PCMH as a key element in the 2010 National HIV/AIDS Strategy for the United States • PCMH has been cited often in federal and private sector health care reform discussions as having the potential to result in more effective and efficient health care delivery, especially for those with chronic diseases.  The grantees will test a number of strategies through their PCMH models.  Examples include: • Improving health outcomes by establishing electronic information exchange within multidisciplinary care teams and among providers of specialty and support services. • Using innovative encounters (telephone, texting, and e-visits) to improve communication between patients and providers. • Testing new models of integrated HIV and aging care services to address the complex needs of persons 50 years and older living with HIV. • Creating a web-based portal to give home health nurses mobile access to electronic health records while working with homebound patients in the field.

34. Resources to Support Effective Communication and Improve Medical Outcomes

35. Communication Training Materials PPC – Case Studies www.patientprovidercommunication.org PPC – Toolkit www.ihs.gov/healthcommunication PPC – Training Course http://www.hrsa.gov/publichealth

36. Agencies and Organizations • AETC – NMC http://www.aetcnmc.org/ • HRSA http://pilot.train.hrsa.gov/uhc/pdf/unified_health_communication_course_references.pdf • CDC http://www.cdc.gov/hiv/topics/prev_prog/rep/packages/partnershipforhealth.htm

37. AETC-NMC Curriculum Review CommitteeCultural Competence - Patient-Provider Communication and the Impact on Medical Outcomes for Patients with HIV • Goulda Downer, Ph.D., RD, LN, CNS - Principal Investigator/Project Director (AETC-NMC) • Josepha Campinha-Bacote, PhD, MAR, PMHCNS-BC, CTN-A, FAAN • I. Jean Davis, PhD, DC,PA • Denise Bailey, MEd.

38. 1840 7th Street NW, 2nd Floor Washington, DC 20001 202-865-8146 (Office) 202-667-1382 (Fax) Goulda Downer, Ph.D., RD, LN, CNS Principle Investigator/Project Director (AETC-NMC) www.AETCNMC.org HRSA Grant Number: U2THA19645