{"id":4021,"date":"2022-08-08T01:35:34","date_gmt":"2022-08-08T05:35:34","guid":{"rendered":"https:\/\/aafa.org\/patient-and-family-engagement\/"},"modified":"2023-08-17T13:43:13","modified_gmt":"2023-08-17T17:43:13","slug":"patient-and-family-engagement","status":"publish","type":"page","link":"https:\/\/aafa.org\/advocacy\/advocacy-resources\/patient-and-family-engagement\/","title":{"rendered":"Patient and Family Engagement"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; admin_label=&#8221;Advocacy T-Hero Section&#8221; module_class=&#8221;hero tert&#8221; _builder_version=&#8221;4.18.0&#8243; _module_preset=&#8221;default&#8221; background_image=&#8221;https:\/\/aafa.org\/wp-content\/uploads\/2022\/07\/AAFA-Website_Tertiary_Advocacy.jpg&#8221; background_position=&#8221;top_right&#8221; custom_padding=&#8221;1%||1%||true|false&#8221; global_module=&#8221;2187&#8243; saved_tabs=&#8221;all&#8221; collapsed=&#8221;on&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; background_enable_image=&#8221;off&#8221; background_size=&#8221;initial&#8221; background_position=&#8221;bottom_left&#8221; background_horizontal_offset=&#8221;0%&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding=&#8221;2%||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text admin_label=&#8221;Nav Parent Title&#8221; module_class=&#8221;tert-parent&#8221; _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; header_2_font=&#8221;|600|||||||&#8221; header_2_text_align=&#8221;left&#8221; header_2_text_color=&#8221;#FFFFFF&#8221; header_2_font_size=&#8221;32px&#8221; custom_margin=&#8221;||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Advocacy<\/h2>\n<p>[\/et_pb_text][et_pb_code admin_label=&#8221;Breadcrumbs&#8221; module_class=&#8221;bcrumb&#8221; _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; text_orientation=&#8221;left&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding=&#8221;||||false|false&#8221; custom_css_main_element=&#8221;font-size:16px;||color: #fff;&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_code][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; admin_label=&#8221;Main Content&#8221; _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;2%||2%||true|false&#8221; collapsed=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;2_3,1_3&#8243; _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;2_3&#8243; _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_post_title meta=&#8221;off&#8221; featured_image=&#8221;off&#8221; admin_label=&#8221;Page Title&#8221; module_class=&#8221;tert-content&#8221; _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; title_font=&#8221;|600|||||||&#8221; title_text_align=&#8221;left&#8221; title_text_color=&#8221;#008c99&#8243; title_font_size=&#8221;39px&#8221; background_enable_image=&#8221;off&#8221; background_size=&#8221;contain&#8221; background_position=&#8221;center_left&#8221; module_alignment=&#8221;left&#8221; custom_margin=&#8221;||0px||false|false&#8221; custom_padding=&#8221;||||false|false&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_post_title][et_pb_text admin_label=&#8221; Intro Content&#8221; module_class=&#8221;secondary-intro&#8221; _builder_version=&#8221;4.17.6&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#505050&#8243; text_font_size=&#8221;24px&#8221; text_line_height=&#8221;1.5em&#8221; header_2_font=&#8221;|600|||||||&#8221; header_2_text_color=&#8221;#008c99&#8243; header_2_font_size=&#8221;39px&#8221; custom_margin=&#8221;||3%||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>The Asthma and Allergy Foundation of America (AAFA) seeks to improve treatment options and protect quality of life for people with asthma and allergic diseases.<\/p>\n<p>[\/et_pb_text][et_pb_text admin_label=&#8221;Regular Content&#8221; _builder_version=&#8221;4.17.6&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#505050&#8243; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>The Health Care World Is Changing<\/h3>\n<p>Much is going on in the health care world. Health and health care decisions are increasingly more complex. Public agencies (state and federal government) and private sector organizations (health plans and insurers) are exploring new ways to pay for health care. People with chronic conditions such as asthma and allergic diseases face economic pressures from rising health care costs. Many also face issues with access to clinicians and providers.In fact, care delivery and preventative services are no longer confined to clinical sites. Many providers are offering more convenient and personalized services. There are now new settings where health care is being delivered. Some physicians are making home visits. Many communities have urgent care clinics. Even grocery stores and pharmacies are involved with care delivery, with many offering vaccinations.<\/p>\n<h3>Patients Can Become More Involved in Their Care<\/h3>\n<p>With all of these changes, the role of patients, families and caregivers is evolving. Terms such as \u201cpatient engagement,&#8221; \u201cpatient-centered care&#8221; and \u201cpatient empowerment&#8221; are finding their way into the health care system. Uses and definitions of the terms vary.<sup>1<\/sup> In general, though, they refer to patients, families and caregivers having an increased role and involvement in health, wellness and care-related decisions about health care.<sup>2<\/sup>Public policy is increasingly focusing on the role of people in managing their own health and health care in partnership with health care providers and payers. For example, some patients, families and caregivers can participate in aspects of care through patient and family advisory councils. One of the main purposes of these councils is to provide suggestions, feedback and input on how to improve the patient and family experience.<\/p>\n<h3>Patient Involvement Requires Health Literacy<\/h3>\n<p>However, the role that people are capable of playing in managing their own health care is dependent on their health literacy. Health literacy is the degree to which an individual has the capacity to obtain, communicate, process and understand basic health information and services in order to make appropriate health decisions.<sup>3,4,5 <\/sup>For example, choosing a healthy lifestyle, knowing how to seek medical care and taking advantage of preventive measures requires that people understand and use health information.AAFA encourages patients, families and caregivers to become knowledgeable and actively participate in their health and health care. This includes accessing, reading, understanding and acting on health information. It also includes working together with clinicians and providers to identify and select treatment options and providing feedback on the outcomes.<sup>6,7<\/sup><\/p>\n<p><strong>Examples of patient engagement activities include:<\/strong><sup>8, 9<\/sup><\/p>\n<ul>\n<li>Accessing reliable and trusted sources of information<sup>10,11<\/sup><\/li>\n<li>Improving your health literacy<sup>12<\/sup><\/li>\n<li>Asking clinicians to use \u201c<a title=\"www.nih.gov\/clearcommunication\/plainlanguage\/index.htm\" href=\"http:\/\/www.nih.gov\/clearcommunication\/plainlanguage\/index.htm\" target=\"_blank\" rel=\"noopener\">plain language<\/a>&#8221; to explain your diagnosis and treatments so that you can understand<\/li>\n<li>Increasing your understanding of your diagnosis and treatment options<\/li>\n<li>Making sure that your provider is communicating with you<\/li>\n<li>Becoming more involved in your care and care coordination<\/li>\n<li>Asking about costs and payment for treatments and medications<\/li>\n<li>Being familiar with your health insurance costs (premiums, copayments, deductibles, co-insurance)<\/li>\n<li>Knowing the difference between in network and out-of-network providers<\/li>\n<li>Voicing your opinions, perspectives and preferences to your clinicians<\/li>\n<li>Providing feedback about care as well as and follow-up treatment and care plans<\/li>\n<li>Asking about participating in patient and family advisory councils or groups<\/li>\n<li>Asking about participating in relevant research (such as clinical trials) for which you may qualify<\/li>\n<\/ul>\n<h3>Patient Access to Medical Records<\/h3>\n<p>Patients also have growing expectations about access to their health data and records. In fact, patients have a federally guaranteed right to see and get a copy of their medical records from most health care providers, including doctors, hospitals, pharmacies and nursing homes. Health plans are also required to provide this information. Plus, patients have a right to ask the plan or provider to provide this information electronically if the plan or health care provider is able to do so.<\/p>\n<p><a title=\"www.healthit.gov\/patients-families\/blue-button\/about-blue-button\" href=\"http:\/\/www.healthit.gov\/patients-families\/blue-button\/about-blue-button\" target=\"_blank\" rel=\"noopener\">The Blue Button<\/a> is another way to get health records electronically. The <a title=\"bluebuttonconnector.healthit.gov\/records\/\" href=\"http:\/\/bluebuttonconnector.healthit.gov\/records\/\" target=\"_blank\" rel=\"noopener\">Blue Button Connector<\/a> is a website that helps people get started in finding out about Blue Button and where they might be able to get their own health information online.<\/p>\n<p>In addition, a federal law called the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule gives people rights over their health information and sets rules and limits on who can look at and receive their health information. The HIPAA Privacy Rule applies to all forms of individuals&#8217; protected health information, whether electronic, written or oral. The Security Rule is a federal law that requires security for health information in electronic form. For more information about the HIPAA privacy rule, see: <a title=\"www.hhs.gov\/ocr\/privacy\/hipaa\/understanding\/consumers\/index.html\" href=\"http:\/\/www.hhs.gov\/ocr\/privacy\/hipaa\/understanding\/consumers\/index.html\" target=\"_blank\" rel=\"noopener\">U.S. Department of Health and Human Services (HHS) Office for Civil Rights.<\/a> Learn more about <a title=\"www.hhs.gov\/ocr\/privacy\/hipaa\/understanding\/consumers\/medicalrecords.html\" href=\"http:\/\/www.hhs.gov\/ocr\/privacy\/hipaa\/understanding\/consumers\/medicalrecords.html\" target=\"_blank\" rel=\"noopener\">Privacy and Your Health Information, Your Health Information Privacy Rights, and the Right of Access.<\/a>[\/et_pb_text][et_pb_accordion open_toggle_text_color=&#8221;#FFFFFF&#8221; open_toggle_background_color=&#8221;#f0f0f0&#8243; closed_toggle_text_color=&#8221;#FFFFFF&#8221; closed_toggle_background_color=&#8221;#f0f0f0&#8243; toggle_icon=&#8221;&#x4c;||divi||400&#8243; icon_color=&#8221;#FFFFFF&#8221; use_icon_font_size=&#8221;on&#8221; icon_font_size=&#8221;20px&#8221; admin_label=&#8221;Accordions&#8221; module_class=&#8221;accord&#8221; _builder_version=&#8221;4.17.6&#8243; _module_preset=&#8221;default&#8221; toggle_text_color=&#8221;#FFFFFF&#8221; toggle_font=&#8221;|600|||||||&#8221; toggle_font_size=&#8221;22px&#8221; closed_toggle_font=&#8221;|600|||||||&#8221; closed_toggle_font_size=&#8221;22px&#8221; body_text_color=&#8221;#505050&#8243; body_font_size=&#8221;16px&#8221; body_link_font=&#8221;||||on|||#008C99|&#8221; text_orientation=&#8221;left&#8221; custom_margin=&#8221;||2%||false|false&#8221; border_width_all=&#8221;0px&#8221; saved_tabs=&#8221;all&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_accordion_item title=&#8221;Closed Accordion&#8221; open=&#8221;on&#8221; _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; custom_css_main_element=&#8221;display:none;&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_accordion_item][et_pb_accordion_item title=&#8221;Other Information and Resources&#8221; open_toggle_background_color=&#8221;#f0f0f0&#8243; closed_toggle_background_color=&#8221;#f0f0f0&#8243; _builder_version=&#8221;4.17.6&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||2%||false|false&#8221; global_colors_info=&#8221;{}&#8221; open=&#8221;off&#8221;]<\/p>\n<div id=\"page\" class=\"page-global\">\n<div id=\"BodyTextEditor\">\n<p><a title=\"Guidelines for the Diagnosis and Management of Asthma (EPR-3)\" href=\"http:\/\/www.nhlbi.nih.gov\/health-pro\/guidelines\/current\/asthma-guidelines\" target=\"_blank\" rel=\"noopener\">Guidelines for the Diagnosis and Management of Asthma (EPR-3)<\/a><\/p>\n<p><a title=\"Health Literacy: A Necessary Element for Achieving Health Equity July 24, 2015\" href=\"http:\/\/nam.edu\/wp-content\/uploads\/2015\/07\/NecessaryElement.pdf\" target=\"_blank\" rel=\"noopener\">Health Literacy: A Necessary Element for Achieving Health Equity July 24, 2015<\/a><\/p>\n<p><a title=\"National Asthma Education and Prevention Program (NAEPP)\" href=\"https:\/\/www.nhlbi.nih.gov\/about\/org\/naepp\" target=\"_blank\" rel=\"noopener\">National Asthma Education and Prevention Program (NAEPP)<\/a><\/p>\n<p><a title=\"Patient and Family Advisory Councils\" href=\"https:\/\/cahps.ahrq.gov\/quality-improvement\/improvement-guide\/browse-interventions\/Customer-Service\/Listening-Posts\/Advisory-Councils.html\" target=\"_blank\" rel=\"noopener\">Patient and Family Advisory Councils<\/a><\/p>\n<p><a title=\"Patient Centered Outcomes Research Institute\" href=\"http:\/\/www.pcori.org\/get-involved\" target=\"_blank\" rel=\"noopener\">Patient Centered Outcomes Research Institute<\/a><\/p>\n<p><a title=\"Shared Decision-Making Strategies for Best Care: Patient Decision Aids\" href=\"http:\/\/nam.edu\/wp-content\/uploads\/2015\/06\/SDMforBestCare2.pdf\" target=\"_blank\" rel=\"noopener\">Shared Decision-Making Strategies for Best Care: Patient Decision Aids<\/a><\/p>\n<p><a title=\"National Academy of Medicine Resource Compendium for Patient &amp; Family Leadership in Health Care\" href=\"http:\/\/nam.edu\/wp-content\/uploads\/2015\/07\/PFHCL-Resource-Compendium-rev17Jul15.pdf\" target=\"_blank\" rel=\"noopener\">National Academy of Medicine Resource Compendium for Patient &amp; Family Leadership in Health Care<\/a><\/p>\n<p><a title=\"Asthma Evidence to Action Network\" href=\"http:\/\/www.pcori.org\/research-results\/our-programs\/addressing-disparities\/asthma-evidence-action-network\" target=\"_blank\" rel=\"noopener\">Asthma Evidence to Action Network<\/a><\/p>\n<\/div>\n<\/div>\n<div id=\"BodyTextEditor\">\n<p>&nbsp;<\/p>\n<\/div>\n<p>[\/et_pb_accordion_item][\/et_pb_accordion][et_pb_text admin_label=&#8221;References&#8221; _builder_version=&#8221;4.17.6&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#505050&#8243; text_font_size=&#8221;16px&#8221; link_text_color=&#8221;#008C99&#8243; link_font_size=&#8221;16px&#8221; header_5_font=&#8221;|600|||||||&#8221; header_5_text_align=&#8221;left&#8221; header_5_text_color=&#8221;#008c99&#8243; custom_margin=&#8221;||3%||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<div id=\"page\" class=\"page-global\">\n<div id=\"BodyTextEditor\">\n<p><strong>References<\/strong><\/p>\n<p><small>[1] Jennifer Gallivan, Katharina Kovacs Burns, Mandy Bellows &amp; Carol Eigenseher<\/small><\/p>\n<p><small>The Many Faces of Patient Engagement | Journal of Participatory Medicine| Vol. 4, 2012 | December 26, 2012 <a title=\"http:\/\/www.jopm.org\/evidence\/research\/2012\/12\/26\/the-many-faces-of-patient-engagement\/\" href=\"http:\/\/www.jopm.org\/evidence\/research\/2012\/12\/26\/the-many-faces-of-patient-engagement\/\" target=\"_blank\" rel=\"noopener\">http:\/\/www.jopm.org\/evidence\/research\/2012\/12\/26\/the-many-faces-of-patient-engagement\/<\/a><\/small><\/p>\n<p><small>[2] IAN WORDEN The Path To Increased Patient Engagement Lies In The Definition<a title=\"http:\/\/www.betterpatientengagement.com\/2013\/03\/03\/the-path-to-increased-patient-engagement-lies-in-the-definition\" href=\"http:\/\/www.betterpatientengagement.com\/2013\/03\/03\/the-path-to-increased-patient-engagement-lies-in-the-definition\" target=\"_blank\" rel=\"noopener\">http:\/\/www.betterpatientengagement.com\/2013\/03\/03\/the-path-to-increased-patient-engagement-lies-in-the-definition<\/a>. MARCH 3, 2013<\/small><\/p>\n<p><small>[3] <a title=\"http:\/\/health.gov\/communication\/literacy\/quickguide\/factsliteracy.htm\" href=\"http:\/\/health.gov\/communication\/literacy\/quickguide\/factsliteracy.htm\" target=\"_blank\" rel=\"noopener\">http:\/\/health.gov\/communication\/literacy\/quickguide\/factsliteracy.htm<\/a><\/small><\/p>\n<p><small>[4] <a title=\"http:\/\/www.cdc.gov\/healthliteracy\/learn\/\" href=\"http:\/\/www.cdc.gov\/healthliteracy\/learn\/\" target=\"_blank\" rel=\"noopener\">http:\/\/www.cdc.gov\/healthliteracy\/learn\/<\/a><\/small><\/p>\n<p><small>[5] <a title=\"http:\/\/www.hrsa.gov\/publichealth\/healthliteracy\/healthlitabout.html\" href=\"http:\/\/www.hrsa.gov\/publichealth\/healthliteracy\/healthlitabout.html\" target=\"_blank\" rel=\"noopener\">http:\/\/www.hrsa.gov\/publichealth\/healthliteracy\/healthlitabout.html<\/a><\/small><\/p>\n<p><small>[6] Coulter A. Patient engagement&#8211;what works? J Ambul Care Manage. 2012 Apr-Jun;35(2):80-9. doi: 10.1097\/JAC.0b013e318249e0fd .<\/small><\/p>\n<p><small>[7] A New Definition of Patient Engagement: What is Engagement and Why is it Important? Center for Advanc ing Health 2010<a title=\"http:\/\/www.cfah.org\/pdfs\/CFAH_Engagement_Behavior_Framework_current.pdf\" href=\"http:\/\/www.cfah.org\/pdfs\/CFAH_Engagement_Behavior_Framework_current.pdf\" target=\"_blank\" rel=\"noopener\">http:\/\/www.cfah.org\/pdfs\/CFAH_Engagement_Behavior_Framework_current.pdf<\/a><\/small><\/p>\n<p><small>[8] <a title=\"https:\/\/marketplace.cms.gov\/technical-assistance-resources\/c2c-roadmap.pdf\" href=\"https:\/\/marketplace.cms.gov\/technical-assistance-resources\/c2c-roadmap.pdf\" target=\"_blank\" rel=\"noopener\">https:\/\/marketplace.cms.gov\/technical-assistance-resources\/c2c-roadmap.pdf<\/a><\/small><\/p>\n<p><small>[9] <a title=\"http:\/\/www.nih.gov\/clearcommunication\/healthliteracy.htm\" href=\"http:\/\/www.nih.gov\/clearcommunication\/healthliteracy.htm\" target=\"_blank\" rel=\"noopener\">http:\/\/www.nih.gov\/clearcommunication\/healthliteracy.htm<\/a><\/small><\/p>\n<p><small>[10] <a title=\"https:\/\/www.nlm.nih.gov\/medlineplus\/\" href=\"https:\/\/www.nlm.nih.gov\/medlineplus\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.nlm.nih.gov\/medlineplus\/<\/a><\/small><\/p>\n<p><small>[11] <a title=\"http:\/\/www.trustortrash.org\/\" href=\"http:\/\/www.trustortrash.org\/\" target=\"_blank\" rel=\"noopener\">http:\/\/www.trustortrash.org\/<\/a><\/small><\/p>\n<p><small>[12] <a title=\"http:\/\/nnlm.gov\/outreach\/consumer\/hlthlit.html\" href=\"http:\/\/nnlm.gov\/outreach\/consumer\/hlthlit.html\" target=\"_blank\" rel=\"noopener\">http:\/\/nnlm.gov\/outreach\/consumer\/hlthlit.html<\/a><\/small><\/p>\n<\/div>\n<\/div>\n<div id=\"BodyTextEditor\">\n<p>&nbsp;<\/p>\n<\/div>\n<p>[\/et_pb_text][et_pb_code admin_label=&#8221;Print&#8221; 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title_text=&#8221;Asthma Disparities Report&#8221; align=&#8221;center&#8221; force_fullwidth=&#8221;on&#8221; admin_label=&#8221;Asthma Disparities Report Image&#8221; _builder_version=&#8221;4.17.6&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||1%||false|false&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_button button_url=&#8221;https:\/\/aafa.org\/wp-content\/uploads\/2022\/08\/asthma-disparities-in-america-burden-on-racial-ethnic-minorities.pdf&#8221; url_new_window=&#8221;on&#8221; button_text=&#8221;View Full Report&#8221; button_alignment=&#8221;center&#8221; admin_label=&#8221;View Asthma Disparities Full Report Button&#8221; _builder_version=&#8221;4.21.0&#8243; _module_preset=&#8221;default&#8221; custom_button=&#8221;on&#8221; button_bg_color=&#8221;#28BDBA&#8221; button_font=&#8221;|600|||||||&#8221; button_use_icon=&#8221;off&#8221; custom_margin=&#8221;6%||||false|false&#8221; custom_css_main_element=&#8221;width:100%;&#8221; saved_tabs=&#8221;all&#8221; global_colors_info=&#8221;{}&#8221; global_module=&#8221;8741&#8243; theme_builder_area=&#8221;post_content&#8221;][\/et_pb_button][et_pb_text admin_label=&#8221;Racial Justice Blurb&#8221; module_class=&#8221;sidebar-blurb&#8221; _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#505050&#8243; text_font_size=&#8221;16px&#8221; link_font=&#8221;|600||on|||||&#8221; link_text_align=&#8221;left&#8221; link_text_color=&#8221;#692d87&#8243; link_font_size=&#8221;16px&#8221; header_4_font=&#8221;|600|||||||&#8221; header_4_text_align=&#8221;left&#8221; header_4_text_color=&#8221;#008c99&#8243; header_4_font_size=&#8221;20px&#8221; background_image=&#8221;https:\/\/aafa.org\/wp-content\/uploads\/2022\/06\/teal_scribble.png&#8221; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; custom_margin=&#8221;8%||8%||true|false&#8221; custom_padding=&#8221;2%||2%||true|false&#8221; global_module=&#8221;4735&#8243; saved_tabs=&#8221;all&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h4>AAFA&#8217;s Commitment to Racial Justice<\/h4>\n<p>Over the past 15 years, there have been moderate advances in U.S. public policy, health care and research, but racial gaps in asthma outcomes have not changed. Minority groups continue to bear disproportionate hardship in managing asthma.<\/p>\n<p>[\/et_pb_text][et_pb_text admin_label=&#8221;Allergy Capitals&#8221; _builder_version=&#8221;4.19.0&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#505050&#8243; text_font_size=&#8221;16px&#8221; link_font=&#8221;|600||on|||||&#8221; link_text_color=&#8221;#008c99&#8243; link_font_size=&#8221;16px&#8221; header_4_font=&#8221;|600|||||||&#8221; header_4_text_color=&#8221;#008c99&#8243; header_4_font_size=&#8221;20px&#8221; background_color=&#8221;#eaeaea&#8221; width=&#8221;100%&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;8%||8%||true|false&#8221; custom_padding=&#8221;6%|6%|6%|6%|true|true&#8221; border_width_top=&#8221;3px&#8221; border_color_top=&#8221;#008c99&#8243; global_module=&#8221;4733&#8243; saved_tabs=&#8221;all&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h4>Allergy Capitals<\/h4>\n<p>Your location can have an impact on your seasonal allergies.\u00a0AAFA\u2019s Allergy Capitals\u2122 report\u00a0looks at the top 100 most challenging cities in the continental United States to live with seasonal pollen allergies.<\/p>\n<p><a href=\"\/asthma-allergy-research\/allergy-capitals\/\">Read the Report&gt;<\/a><\/p>\n<p>[\/et_pb_text][et_pb_code admin_label=&#8221;Join Community Form&#8221; module_class=&#8221;joinwidget&#8221; _builder_version=&#8221;4.19.0&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#f5eddf&#8221; box_shadow_style=&#8221;preset2&#8243; global_module=&#8221;8956&#8243; saved_tabs=&#8221;all&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<div class=\"joinform\"><!-- [et_pb_line_break_holder] -->\t\t<\/p>\n<h3 style=\"text-align:center; \">Join Our Online Support Community<\/h3>\n<p><!-- [et_pb_line_break_holder] -->\t\t<\/p>\n<form method=\"get\" action=\"https:\/\/community.aafa.org\/join\" id=\"Join\" name=\"AAFAJoin\"><!-- [et_pb_line_break_holder] -->\t\t\t<pee>Email:<input type=\"text\" name=\"email\" value=\"\" maxlength=\"40\" style=\"width:100%\"><\/pee><!-- [et_pb_line_break_holder] -->\t\t\t<pee>Display Name: <input type=\"text\" name=\"displayName\" value=\"\" maxlength=\"40\" style=\"width:100%\"><\/pee><!-- [et_pb_line_break_holder] -->\t\t\t<pee style=\"text-align:center\"><input type=\"submit\" value=\"Join Now\"><\/pee><!-- [et_pb_line_break_holder] -->    <\/form>\n<p><!-- [et_pb_line_break_holder] -->\t\t\t<pee><!-- [et_pb_line_break_holder] -->\t\t\t\tAAFA is dedicated to improving the quality of life for people with asthma and allergic diseases. Our community is here for you 24\/7. You can connect with others who understand what it is like to live with asthma and allergies. You&#8217;re not alone.<!-- [et_pb_line_break_holder] -->\t\t\t<\/pee><!-- [et_pb_line_break_holder] -->      <!-- <pee style=\"display:block; text-align:center \"><img decoding=\"async\" src=\"https:\/\/www.aafa.org\/media\/1003\/aafa-mobile.png\" loading=\"lazy\" \/><\/pee>\t--><!-- [et_pb_line_break_holder] --><\/div>\n<p>[\/et_pb_code][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; admin_label=&#8221;Blog Feed Section&#8221; module_class=&#8221;int-blog-ftr&#8221; _builder_version=&#8221;4.18.0&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#F5EDDF&#8221; custom_margin=&#8221;||||false|false&#8221; custom_padding=&#8221;2%||2%||false|false&#8221; top_divider_color=&#8221;#28BDBA&#8221; top_divider_flip=&#8221;horizontal&#8221; bottom_divider_color=&#8221;#28BDBA&#8221; bottom_divider_height=&#8221;50px&#8221; bottom_divider_arrangement=&#8221;above_content&#8221; global_module=&#8221;9349&#8243; saved_tabs=&#8221;all&#8221; 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use_custom_gutter=&#8221;on&#8221; gutter_width=&#8221;2&#8243; disabled_on=&#8221;off|off|off&#8221; _builder_version=&#8221;4.18.0&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;||1%||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_3&#8243; _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/aafa.org\/wp-content\/uploads\/2023\/05\/health-equity-heal-year2-launch-BT.png&#8221; alt=&#8221;Chick-fil-A product change alert&#8221; title_text=&#8221;health-equity-heal-year2-launch-BT&#8221; url=&#8221;https:\/\/community.aafa.org\/blog\/what-the-inflation-reduction-act-means-for-people-with-asthma-and-allergies&#8221; show_bottom_space=&#8221;off&#8221; align=&#8221;center&#8221; _builder_version=&#8221;4.20.4&#8243; _module_preset=&#8221;default&#8221; background_enable_image=&#8221;off&#8221; width=&#8221;100%&#8221; custom_margin=&#8221;0px||0px||false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_text admin_label=&#8221;Blog Link Text&#8221; _builder_version=&#8221;4.20.4&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;|600|||||||&#8221; text_text_color=&#8221;#28BDBA&#8221; text_font_size=&#8221;16px&#8221; text_line_height=&#8221;1.6em&#8221; link_font=&#8221;|600|||||||&#8221; link_text_align=&#8221;left&#8221; link_text_color=&#8221;#28BDBA&#8221; link_font_size=&#8221;16px&#8221; link_line_height=&#8221;1.6em&#8221; background_color=&#8221;#FFFFFF&#8221; height=&#8221;105px&#8221; custom_padding=&#8221;5%|4%|4%|8%|false|false&#8221; global_colors_info=&#8221;{}&#8221; text_text_color__hover_enabled=&#8221;on|hover&#8221; text_text_color__hover=&#8221;#28BDBA&#8221; link_text_color__hover_enabled=&#8221;on|hover&#8221; link_text_color__hover=&#8221;#692D87&#8243;]<\/p>\n<p><a href=\"https:\/\/community.aafa.org\/blog\/aafa-expands-heal-program-to-further-serve-communities-facing-health-inequities\" target=\"_blank\" rel=\"noopener\">AAFA Expands HEAL Program to Further Serve Communities Facing Health Inequities<\/a><\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_3&#8243; _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/aafa.org\/wp-content\/uploads\/2023\/04\/asthma-and-allergy-awareness-month-2023-BT.png&#8221; alt=&#8221;Lunch Box hacks&#8221; title_text=&#8221;asthma-and-allergy-awareness-month-2023-BT&#8221; url=&#8221;https:\/\/community.aafa.org\/blog\/school-based-allergies-and-asthma-management-program-act-h-r-2468-becomes-law&#8221; show_bottom_space=&#8221;off&#8221; align=&#8221;center&#8221; _builder_version=&#8221;4.20.4&#8243; _module_preset=&#8221;default&#8221; background_enable_image=&#8221;off&#8221; width=&#8221;100%&#8221; custom_margin=&#8221;0px||0px||false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_text admin_label=&#8221;Blog Link Text&#8221; _builder_version=&#8221;4.20.4&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;|600|||||||&#8221; text_text_color=&#8221;#28BDBA&#8221; text_font_size=&#8221;16px&#8221; text_line_height=&#8221;1.6em&#8221; link_font=&#8221;|600|||||||&#8221; link_text_align=&#8221;left&#8221; link_text_color=&#8221;#28BDBA&#8221; link_font_size=&#8221;16px&#8221; link_line_height=&#8221;1.6em&#8221; background_color=&#8221;#FFFFFF&#8221; height=&#8221;105px&#8221; custom_padding=&#8221;5%|4%|4%|8%|false|false&#8221; global_colors_info=&#8221;{}&#8221; text_text_color__hover_enabled=&#8221;on|hover&#8221; text_text_color__hover=&#8221;#28BDBA&#8221; link_text_color__hover_enabled=&#8221;on|hover&#8221; link_text_color__hover=&#8221;#692D87&#8243;]<\/p>\n<p><a href=\"https:\/\/community.aafa.org\/blog\/take-action-to-raise-asthma-and-allergy-awareness\" target=\"_blank\" rel=\"noopener\">Take Action to Raise Asthma and Allergy Awareness<\/a><\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_3&#8243; _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/aafa.org\/wp-content\/uploads\/2023\/05\/advocacy-day-BT.png&#8221; alt=&#8221;Milk Allergy Alert&#8221; title_text=&#8221;advocacy-day-BT&#8221; url=&#8221;https:\/\/community.aafa.org\/blog\/dot-proposes-new-rules-for-animals-on-planes&#8221; show_bottom_space=&#8221;off&#8221; align=&#8221;center&#8221; _builder_version=&#8221;4.20.4&#8243; _module_preset=&#8221;default&#8221; background_enable_image=&#8221;off&#8221; width=&#8221;100%&#8221; custom_margin=&#8221;0px||0px||false|false&#8221; custom_padding=&#8221;0px||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_text admin_label=&#8221;Blog Link Text&#8221; _builder_version=&#8221;4.20.4&#8243; _module_preset=&#8221;default&#8221; text_font=&#8221;|600|||||||&#8221; text_text_color=&#8221;#28BDBA&#8221; text_font_size=&#8221;16px&#8221; text_line_height=&#8221;1.6em&#8221; link_font=&#8221;|600|||||||&#8221; link_text_align=&#8221;left&#8221; link_text_color=&#8221;#28BDBA&#8221; link_font_size=&#8221;16px&#8221; link_line_height=&#8221;1.6em&#8221; background_color=&#8221;#FFFFFF&#8221; height=&#8221;105px&#8221; custom_padding=&#8221;5%|4%|4%|8%|false|false&#8221; global_colors_info=&#8221;{}&#8221; text_text_color__hover_enabled=&#8221;on|hover&#8221; text_text_color__hover=&#8221;#28BDBA&#8221; link_text_color__hover_enabled=&#8221;on|hover&#8221; link_text_color__hover=&#8221;#692D87&#8243;]<\/p>\n<p><a href=\"https:\/\/community.aafa.org\/blog\/advocacy-action-day-for-people-with-asthma-and-allergies\" target=\"_blank\" rel=\"noopener\">Local Advocacy Action Day for People with Asthma and Allergies<\/a><\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.18.0&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;0px||||false|false&#8221; custom_padding=&#8221;0px||0px||true|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.18.0&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text admin_label=&#8221;View More Link&#8221; _builder_version=&#8221;4.18.0&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#008C99&#8243; link_font=&#8221;|600||on|||||&#8221; link_text_align=&#8221;right&#8221; link_text_color=&#8221;#008C99&#8243; link_font_size=&#8221;18px&#8221; text_orientation=&#8221;right&#8221; global_colors_info=&#8221;{}&#8221; link_text_color__hover_enabled=&#8221;on|hover&#8221; link_text_color__hover=&#8221;#692D87&#8243;]<\/p>\n<p><a href=\"https:\/\/community.aafa.org\/blog\" target=\"_blank\" rel=\"noopener\">View more blog articles &gt;<\/a><\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>AdvocacyThe Asthma and Allergy Foundation of America (AAFA) seeks to improve treatment options and protect quality of life for people with asthma and allergic diseases.The Health Care World Is Changing [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":0,"parent":937,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_et_pb_use_builder":"on","_et_pb_old_content":"<p>[et_pb_section fb_built=\"1\" admin_label=\"About Hero Section\" _builder_version=\"4.17.5\" _module_preset=\"default\" background_image=\"2723\" background_position=\"center_right\" custom_padding=\"2%||2%||true|false\" hover_enabled=\"0\" global_module=\"1511\" saved_tabs=\"all\" collapsed=\"off\" global_colors_info=\"{}\" alt=\"About AAFA\" title_text=\"AAFA-Website_Secondary_About\" sticky_enabled=\"0\"] [et_pb_row _builder_version=\"4.17.4\" _module_preset=\"default\" background_image=\"2724\" background_size=\"initial\" background_position=\"bottom_left\" background_horizontal_offset=\"0%\" background_vertical_offset=\"-5%\" custom_margin=\"|||0px|false|false\" custom_padding=\"0px||0px||true|false\" global_colors_info=\"{}\"] [et_pb_column type=\"4_4\" _builder_version=\"4.17.4\" _module_preset=\"default\" custom_padding=\"|||5%|false|false\" global_colors_info=\"{}\"][et_pb_post_title meta=\"off\" featured_image=\"off\" admin_label=\"Page Title\" _builder_version=\"4.17.4\" _module_preset=\"default\" title_font=\"|600|||||||\" title_text_color=\"#FFFFFF\" title_font_size=\"62px\" background_enable_image=\"off\" background_size=\"contain\" background_position=\"center_left\" module_alignment=\"left\" custom_margin=\"||0px||false|false\" custom_padding=\"8%||0px||false|false\" global_colors_info=\"{}\"][\/et_pb_post_title][et_pb_code admin_label=\"Breadcrumbs\" module_class=\"bcrumb\" _builder_version=\"4.17.4\" _module_preset=\"default\" text_orientation=\"left\" custom_margin=\"||||false|false\" custom_padding=\"||||false|false\" custom_css_main_element=\"font-size:16px;||color: #fff;\" global_colors_info=\"{}\"][wpseo_breadcrumb][\/et_pb_code][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\"1\" admin_label=\"Main Content\" _builder_version=\"4.17.4\" _module_preset=\"default\" background_enable_image=\"off\" background_size=\"initial\" background_position=\"bottom_right\" custom_padding=\"2%||2%||true|false\" global_colors_info=\"{}\"][et_pb_row column_structure=\"2_3,1_3\" _builder_version=\"4.17.4\" _module_preset=\"default\" global_colors_info=\"{}\"] [et_pb_column type=\"2_3\" _builder_version=\"4.17.4\" _module_preset=\"default\" global_colors_info=\"{}\"] [et_pb_text admin_label=\"Page Content\" module_class=\"secondary-intro\" _builder_version=\"4.17.4\" _module_preset=\"default\" text_text_color=\"#505050\" text_font_size=\"24px\" text_line_height=\"1.5em\" header_2_font=\"|600|||||||\" header_2_text_color=\"#008c99\" header_2_font_size=\"39px\" custom_margin=\"||3%||false|false\" global_colors_info=\"{}\"]<\/p><div id=\"page\" class=\"page-global\"><div id=\"BodyTextEditor\"><p><strong>What It Is and What It Means for Patients, Families and Caregivers<\/strong><\/p><p>The Asthma and Allergy Foundation of America (AAFA) seeks to improve treatment options and protect quality of life for people with asthma and allergic diseases.<\/p><p><strong>The Health Care World Is Changing<\/strong><br \/>Much is going on in the health care world. Health and health care decisions are increasingly more complex. Public agencies (state and federal government) and private sector organizations (health plans and insurers) are exploring new ways to pay for health care. People with chronic conditions such as asthma and allergic diseases face economic pressures from rising health care costs. Many also face issues with access to clinicians and providers.<\/p><p>In fact, care delivery and preventative services are no longer confined to clinical sites. Many providers are offering more convenient and personalized services. There are now new settings where health care is being delivered. Some physicians are making home visits. Many communities have urgent care clinics. Even grocery stores and pharmacies are involved with care delivery, with many offering vaccinations.<\/p><p><strong>Patients Can Become More Involved in Their Care<\/strong><br \/>With all of these changes, the role of patients, families and caregivers is evolving. Terms such as \u201cpatient engagement,\" \u201cpatient-centered care\" and \u201cpatient empowerment\" are finding their way into the health care system. Uses and definitions of the terms vary.<sup>1<\/sup> In general, though, they refer to patients, families and caregivers having an increased role and involvement in health, wellness and care-related decisions about health care.<sup>2<\/sup><\/p><p>Public policy is increasingly focusing on the role of people in managing their own health and health care in partnership with health care providers and payers. For example, some patients, families and caregivers can participate in aspects of care through patient and family advisory councils. One of the main purposes of these councils is to provide suggestions, feedback and input on how to improve the patient and family experience.<\/p><p><strong>Patient Involvement Requires Health Literacy<\/strong><br \/>However, the role that people are capable of playing in managing their own health care is dependent on their health literacy. Health literacy is the degree to which an individual has the capacity to obtain, communicate, process and understand basic health information and services in order to make appropriate health decisions.<sup>3,4,5 <\/sup>For example, choosing a healthy lifestyle, knowing how to seek medical care and taking advantage of preventive measures requires that people understand and use health information.<\/p><p>AAFA encourages patients, families and caregivers to become knowledgeable and actively participate in their health and health care. This includes accessing, reading, understanding and acting on health information. It also includes working together with clinicians and providers to identify and select treatment options and providing feedback on the outcomes.<sup>6,7<\/sup><\/p><p><strong>Examples of patient engagement activities include:<\/strong><sup>8, 9<\/sup><\/p><ul><li>Accessing reliable and trusted sources of information<sup>10,11<\/sup><\/li><li>Improving your health literacy<sup>12<\/sup><\/li><li>Asking clinicians to use \u201c<a title=\"www.nih.gov\/clearcommunication\/plainlanguage\/index.htm\" href=\"http:\/\/www.nih.gov\/clearcommunication\/plainlanguage\/index.htm\" target=\"_blank\" rel=\"noopener\">plain language<\/a>\" to explain your diagnosis and treatments so that you can understand<\/li><li>Increasing your understanding of your diagnosis and treatment options<\/li><li>Making sure that your provider is communicating with you<\/li><li>Becoming more involved in your care and care coordination<\/li><li>Asking about costs and payment for treatments and medications<\/li><li>Being familiar with your health insurance costs (premiums, copayments, deductibles, co-insurance)<\/li><li>Knowing the difference between in network and out-of-network providers<\/li><li>Voicing your opinions, perspectives and preferences to your clinicians<\/li><li>Providing feedback about care as well as and follow-up treatment and care plans<\/li><li>Asking about participating in patient and family advisory councils or groups<\/li><li>Asking about participating in relevant research (such as clinical trials) for which you may qualify<\/li><\/ul><p><strong>Patient Access to Medical Records<\/strong><br \/>Patients also have growing expectations about access to their health data and records. In fact, patients have a federally guaranteed right to see and get a copy of their medical records from most health care providers, including doctors, hospitals, pharmacies and nursing homes. Health plans are also required to provide this information. Plus, patients have a right to ask the plan or provider to provide this information electronically if the plan or health care provider is able to do so.<\/p><p><a title=\"www.healthit.gov\/patients-families\/blue-button\/about-blue-button\" href=\"http:\/\/www.healthit.gov\/patients-families\/blue-button\/about-blue-button\" target=\"_blank\" rel=\"noopener\">The Blue Button<\/a> is another way to get health records electronically. The <a title=\"bluebuttonconnector.healthit.gov\/records\/\" href=\"http:\/\/bluebuttonconnector.healthit.gov\/records\/\" target=\"_blank\" rel=\"noopener\">Blue Button Connector<\/a> is a website that helps people get started in finding out about Blue Button and where they might be able to get their own health information online.<\/p><p>In addition, a federal law called the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule gives people rights over their health information and sets rules and limits on who can look at and receive their health information. The HIPAA Privacy Rule applies to all forms of individuals' protected health information, whether electronic, written or oral. The Security Rule is a federal law that requires security for health information in electronic form. For more information about the HIPAA privacy rule, see: <a title=\"www.hhs.gov\/ocr\/privacy\/hipaa\/understanding\/consumers\/index.html\" href=\"http:\/\/www.hhs.gov\/ocr\/privacy\/hipaa\/understanding\/consumers\/index.html\" target=\"_blank\" rel=\"noopener\">U.S. Department of Health and Human Services (HHS) Office for Civil Rights.<\/a> Learn more about <a title=\"www.hhs.gov\/ocr\/privacy\/hipaa\/understanding\/consumers\/medicalrecords.html\" href=\"http:\/\/www.hhs.gov\/ocr\/privacy\/hipaa\/understanding\/consumers\/medicalrecords.html\" target=\"_blank\" rel=\"noopener\">Privacy and Your Health Information, Your Health Information Privacy Rights, and the Right of Access.<\/a><\/p><h3>Other Information and Resources<\/h3><p><a title=\"Guidelines for the Diagnosis and Management of Asthma (EPR-3)\" href=\"http:\/\/www.nhlbi.nih.gov\/health-pro\/guidelines\/current\/asthma-guidelines\" target=\"_blank\" rel=\"noopener\">Guidelines for the Diagnosis and Management of Asthma (EPR-3)<\/a><\/p><p><a title=\"Health Literacy: A Necessary Element for Achieving Health Equity July 24, 2015\" href=\"http:\/\/nam.edu\/wp-content\/uploads\/2015\/07\/NecessaryElement.pdf\" target=\"_blank\" rel=\"noopener\">Health Literacy: A Necessary Element for Achieving Health Equity July 24, 2015<\/a><\/p><p><a title=\"National Asthma Education and Prevention Program (NAEPP)\" href=\"https:\/\/www.nhlbi.nih.gov\/about\/org\/naepp\" target=\"_blank\" rel=\"noopener\">National Asthma Education and Prevention Program (NAEPP)<\/a><\/p><p><a title=\"Patient and Family Advisory Councils\" href=\"https:\/\/cahps.ahrq.gov\/quality-improvement\/improvement-guide\/browse-interventions\/Customer-Service\/Listening-Posts\/Advisory-Councils.html\" target=\"_blank\" rel=\"noopener\">Patient and Family Advisory Councils<\/a><\/p><p><a title=\"Patient Centered Outcomes Research Institute\" href=\"http:\/\/www.pcori.org\/get-involved\" target=\"_blank\" rel=\"noopener\">Patient Centered Outcomes Research Institute<\/a><\/p><p><a title=\"Shared Decision-Making Strategies for Best Care: Patient Decision Aids\" href=\"http:\/\/nam.edu\/wp-content\/uploads\/2015\/06\/SDMforBestCare2.pdf\" target=\"_blank\" rel=\"noopener\">Shared Decision-Making Strategies for Best Care: Patient Decision Aids<\/a><\/p><p><a title=\"National Academy of Medicine Resource Compendium for Patient & Family Leadership in Health Care\" href=\"http:\/\/nam.edu\/wp-content\/uploads\/2015\/07\/PFHCL-Resource-Compendium-rev17Jul15.pdf\" target=\"_blank\" rel=\"noopener\">National Academy of Medicine Resource Compendium for Patient & Family Leadership in Health Care<\/a><\/p><p><a title=\"Asthma Evidence to Action Network\" href=\"http:\/\/www.pcori.org\/research-results\/our-programs\/addressing-disparities\/asthma-evidence-action-network\" target=\"_blank\" rel=\"noopener\">Asthma Evidence to Action Network<\/a><\/p><p><strong>References<\/strong><\/p><p><small>[1] Jennifer Gallivan, Katharina Kovacs Burns, Mandy Bellows & Carol Eigenseher<\/small><\/p><p><small>The Many Faces of Patient Engagement | Journal of Participatory Medicine| Vol. 4, 2012 | December 26, 2012 <a title=\"http:\/\/www.jopm.org\/evidence\/research\/2012\/12\/26\/the-many-faces-of-patient-engagement\/\" href=\"http:\/\/www.jopm.org\/evidence\/research\/2012\/12\/26\/the-many-faces-of-patient-engagement\/\" target=\"_blank\" rel=\"noopener\">http:\/\/www.jopm.org\/evidence\/research\/2012\/12\/26\/the-many-faces-of-patient-engagement\/<\/a><\/small><\/p><p><small>[2] IAN WORDEN The Path To Increased Patient Engagement Lies In The Definition<a title=\"http:\/\/www.betterpatientengagement.com\/2013\/03\/03\/the-path-to-increased-patient-engagement-lies-in-the-definition\" href=\"http:\/\/www.betterpatientengagement.com\/2013\/03\/03\/the-path-to-increased-patient-engagement-lies-in-the-definition\" target=\"_blank\" rel=\"noopener\">http:\/\/www.betterpatientengagement.com\/2013\/03\/03\/the-path-to-increased-patient-engagement-lies-in-the-definition<\/a>. MARCH 3, 2013<\/small><\/p><p><small>[3] <a title=\"http:\/\/health.gov\/communication\/literacy\/quickguide\/factsliteracy.htm\" href=\"http:\/\/health.gov\/communication\/literacy\/quickguide\/factsliteracy.htm\" target=\"_blank\" rel=\"noopener\">http:\/\/health.gov\/communication\/literacy\/quickguide\/factsliteracy.htm<\/a><\/small><\/p><p><small>[4] <a title=\"http:\/\/www.cdc.gov\/healthliteracy\/learn\/\" href=\"http:\/\/www.cdc.gov\/healthliteracy\/learn\/\" target=\"_blank\" rel=\"noopener\">http:\/\/www.cdc.gov\/healthliteracy\/learn\/<\/a><\/small><\/p><p><small>[5] <a title=\"http:\/\/www.hrsa.gov\/publichealth\/healthliteracy\/healthlitabout.html\" href=\"http:\/\/www.hrsa.gov\/publichealth\/healthliteracy\/healthlitabout.html\" target=\"_blank\" rel=\"noopener\">http:\/\/www.hrsa.gov\/publichealth\/healthliteracy\/healthlitabout.html<\/a><\/small><\/p><p><small>[6] Coulter A. Patient engagement--what works? J Ambul Care Manage. 2012 Apr-Jun;35(2):80-9. doi: 10.1097\/JAC.0b013e318249e0fd .<\/small><\/p><p><small>[7] A New Definition of Patient Engagement: What is Engagement and Why is it Important? Center for Advanc ing Health 2010<a title=\"http:\/\/www.cfah.org\/pdfs\/CFAH_Engagement_Behavior_Framework_current.pdf\" href=\"http:\/\/www.cfah.org\/pdfs\/CFAH_Engagement_Behavior_Framework_current.pdf\" target=\"_blank\" rel=\"noopener\">http:\/\/www.cfah.org\/pdfs\/CFAH_Engagement_Behavior_Framework_current.pdf<\/a><\/small><\/p><p><small>[8] <a title=\"https:\/\/marketplace.cms.gov\/technical-assistance-resources\/c2c-roadmap.pdf\" href=\"https:\/\/marketplace.cms.gov\/technical-assistance-resources\/c2c-roadmap.pdf\" target=\"_blank\" rel=\"noopener\">https:\/\/marketplace.cms.gov\/technical-assistance-resources\/c2c-roadmap.pdf<\/a><\/small><\/p><p><small>[9] <a title=\"http:\/\/www.nih.gov\/clearcommunication\/healthliteracy.htm\" href=\"http:\/\/www.nih.gov\/clearcommunication\/healthliteracy.htm\" target=\"_blank\" rel=\"noopener\">http:\/\/www.nih.gov\/clearcommunication\/healthliteracy.htm<\/a><\/small><\/p><p><small>[10] <a title=\"https:\/\/www.nlm.nih.gov\/medlineplus\/\" href=\"https:\/\/www.nlm.nih.gov\/medlineplus\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.nlm.nih.gov\/medlineplus\/<\/a><\/small><\/p><p><small>[11] <a title=\"http:\/\/www.trustortrash.org\/\" href=\"http:\/\/www.trustortrash.org\/\" target=\"_blank\" rel=\"noopener\">http:\/\/www.trustortrash.org\/<\/a><\/small><\/p><p><small>[12] <a title=\"http:\/\/nnlm.gov\/outreach\/consumer\/hlthlit.html\" href=\"http:\/\/nnlm.gov\/outreach\/consumer\/hlthlit.html\" target=\"_blank\" rel=\"noopener\">http:\/\/nnlm.gov\/outreach\/consumer\/hlthlit.html<\/a><\/small><\/p><\/div><\/div><div id=\"BodyTextEditor\"><p><strong>What It Is and What It Means for Patients, Families and Caregivers<\/strong><\/p><p>The Asthma and Allergy Foundation of America (AAFA) seeks to improve treatment options and protect quality of life for people with asthma and allergic diseases.<\/p><p><strong>The Health Care World Is Changing<\/strong><br \/>Much is going on in the health care world. Health and health care decisions are increasingly more complex. Public agencies (state and federal government) and private sector organizations (health plans and insurers) are exploring new ways to pay for health care. People with chronic conditions such as asthma and allergic diseases face economic pressures from rising health care costs. Many also face issues with access to clinicians and providers.<\/p><p>In fact, care delivery and preventative services are no longer confined to clinical sites. Many providers are offering more convenient and personalized services. There are now new settings where health care is being delivered. Some physicians are making home visits. Many communities have urgent care clinics. Even grocery stores and pharmacies are involved with care delivery, with many offering vaccinations.<\/p><p><strong>Patients Can Become More Involved in Their Care<\/strong><br \/>With all of these changes, the role of patients, families and caregivers is evolving. Terms such as \u201cpatient engagement,\" \u201cpatient-centered care\" and \u201cpatient empowerment\" are finding their way into the health care system. Uses and definitions of the terms vary.<sup>1<\/sup> In general, though, they refer to patients, families and caregivers having an increased role and involvement in health, wellness and care-related decisions about health care.<sup>2<\/sup><\/p><p>Public policy is increasingly focusing on the role of people in managing their own health and health care in partnership with health care providers and payers. For example, some patients, families and caregivers can participate in aspects of care through patient and family advisory councils. One of the main purposes of these councils is to provide suggestions, feedback and input on how to improve the patient and family experience.<\/p><p><strong>Patient Involvement Requires Health Literacy<\/strong><br \/>However, the role that people are capable of playing in managing their own health care is dependent on their health literacy. Health literacy is the degree to which an individual has the capacity to obtain, communicate, process and understand basic health information and services in order to make appropriate health decisions.<sup>3,4,5 <\/sup>For example, choosing a healthy lifestyle, knowing how to seek medical care and taking advantage of preventive measures requires that people understand and use health information.<\/p><p>AAFA encourages patients, families and caregivers to become knowledgeable and actively participate in their health and health care. This includes accessing, reading, understanding and acting on health information. It also includes working together with clinicians and providers to identify and select treatment options and providing feedback on the outcomes.<sup>6,7<\/sup><\/p><p><strong>Examples of patient engagement activities include:<\/strong><sup>8, 9<\/sup><\/p><ul><li>Accessing reliable and trusted sources of information<sup>10,11<\/sup><\/li><li>Improving your health literacy<sup>12<\/sup><\/li><li>Asking clinicians to use \u201c<a title=\"www.nih.gov\/clearcommunication\/plainlanguage\/index.htm\" href=\"http:\/\/www.nih.gov\/clearcommunication\/plainlanguage\/index.htm\" target=\"_blank\" rel=\"noopener\">plain language<\/a>\" to explain your diagnosis and treatments so that you can understand<\/li><li>Increasing your understanding of your diagnosis and treatment options<\/li><li>Making sure that your provider is communicating with you<\/li><li>Becoming more involved in your care and care coordination<\/li><li>Asking about costs and payment for treatments and medications<\/li><li>Being familiar with your health insurance costs (premiums, copayments, deductibles, co-insurance)<\/li><li>Knowing the difference between in network and out-of-network providers<\/li><li>Voicing your opinions, perspectives and preferences to your clinicians<\/li><li>Providing feedback about care as well as and follow-up treatment and care plans<\/li><li>Asking about participating in patient and family advisory councils or groups<\/li><li>Asking about participating in relevant research (such as clinical trials) for which you may qualify<\/li><\/ul><p><strong>Patient Access to Medical Records<\/strong><br \/>Patients also have growing expectations about access to their health data and records. In fact, patients have a federally guaranteed right to see and get a copy of their medical records from most health care providers, including doctors, hospitals, pharmacies and nursing homes. Health plans are also required to provide this information. Plus, patients have a right to ask the plan or provider to provide this information electronically if the plan or health care provider is able to do so.<\/p><p><a title=\"www.healthit.gov\/patients-families\/blue-button\/about-blue-button\" href=\"http:\/\/www.healthit.gov\/patients-families\/blue-button\/about-blue-button\" target=\"_blank\" rel=\"noopener\">The Blue Button<\/a> is another way to get health records electronically. The <a title=\"bluebuttonconnector.healthit.gov\/records\/\" href=\"http:\/\/bluebuttonconnector.healthit.gov\/records\/\" target=\"_blank\" rel=\"noopener\">Blue Button Connector<\/a> is a website that helps people get started in finding out about Blue Button and where they might be able to get their own health information online.<\/p><p>In addition, a federal law called the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule gives people rights over their health information and sets rules and limits on who can look at and receive their health information. The HIPAA Privacy Rule applies to all forms of individuals' protected health information, whether electronic, written or oral. The Security Rule is a federal law that requires security for health information in electronic form. For more information about the HIPAA privacy rule, see: <a title=\"www.hhs.gov\/ocr\/privacy\/hipaa\/understanding\/consumers\/index.html\" href=\"http:\/\/www.hhs.gov\/ocr\/privacy\/hipaa\/understanding\/consumers\/index.html\" target=\"_blank\" rel=\"noopener\">U.S. Department of Health and Human Services (HHS) Office for Civil Rights.<\/a> Learn more about <a title=\"www.hhs.gov\/ocr\/privacy\/hipaa\/understanding\/consumers\/medicalrecords.html\" href=\"http:\/\/www.hhs.gov\/ocr\/privacy\/hipaa\/understanding\/consumers\/medicalrecords.html\" target=\"_blank\" rel=\"noopener\">Privacy and Your Health Information, Your Health Information Privacy Rights, and the Right of Access.<\/a><\/p><h3>Other Information and Resources<\/h3><p><a title=\"Guidelines for the Diagnosis and Management of Asthma (EPR-3)\" href=\"http:\/\/www.nhlbi.nih.gov\/health-pro\/guidelines\/current\/asthma-guidelines\" target=\"_blank\" rel=\"noopener\">Guidelines for the Diagnosis and Management of Asthma (EPR-3)<\/a><\/p><p><a title=\"Health Literacy: A Necessary Element for Achieving Health Equity July 24, 2015\" href=\"http:\/\/nam.edu\/wp-content\/uploads\/2015\/07\/NecessaryElement.pdf\" target=\"_blank\" rel=\"noopener\">Health Literacy: A Necessary Element for Achieving Health Equity July 24, 2015<\/a><\/p><p><a title=\"National Asthma Education and Prevention Program (NAEPP)\" href=\"https:\/\/www.nhlbi.nih.gov\/about\/org\/naepp\" target=\"_blank\" rel=\"noopener\">National Asthma Education and Prevention Program (NAEPP)<\/a><\/p><p><a title=\"Patient and Family Advisory Councils\" href=\"https:\/\/cahps.ahrq.gov\/quality-improvement\/improvement-guide\/browse-interventions\/Customer-Service\/Listening-Posts\/Advisory-Councils.html\" target=\"_blank\" rel=\"noopener\">Patient and Family Advisory Councils<\/a><\/p><p><a title=\"Patient Centered Outcomes Research Institute\" href=\"http:\/\/www.pcori.org\/get-involved\" target=\"_blank\" rel=\"noopener\">Patient Centered Outcomes Research Institute<\/a><\/p><p><a title=\"Shared Decision-Making Strategies for Best Care: Patient Decision Aids\" href=\"http:\/\/nam.edu\/wp-content\/uploads\/2015\/06\/SDMforBestCare2.pdf\" target=\"_blank\" rel=\"noopener\">Shared Decision-Making Strategies for Best Care: Patient Decision Aids<\/a><\/p><p><a title=\"National Academy of Medicine Resource Compendium for Patient & Family Leadership in Health Care\" href=\"http:\/\/nam.edu\/wp-content\/uploads\/2015\/07\/PFHCL-Resource-Compendium-rev17Jul15.pdf\" target=\"_blank\" rel=\"noopener\">National Academy of Medicine Resource Compendium for Patient & Family Leadership in Health Care<\/a><\/p><p><a title=\"Asthma Evidence to Action Network\" href=\"http:\/\/www.pcori.org\/research-results\/our-programs\/addressing-disparities\/asthma-evidence-action-network\" target=\"_blank\" rel=\"noopener\">Asthma Evidence to Action Network<\/a><\/p><p><strong>References<\/strong><\/p><p><small>[1] Jennifer Gallivan, Katharina Kovacs Burns, Mandy Bellows & Carol Eigenseher<\/small><\/p><p><small>The Many Faces of Patient Engagement | Journal of Participatory Medicine| Vol. 4, 2012 | December 26, 2012 <a title=\"http:\/\/www.jopm.org\/evidence\/research\/2012\/12\/26\/the-many-faces-of-patient-engagement\/\" href=\"http:\/\/www.jopm.org\/evidence\/research\/2012\/12\/26\/the-many-faces-of-patient-engagement\/\" target=\"_blank\" rel=\"noopener\">http:\/\/www.jopm.org\/evidence\/research\/2012\/12\/26\/the-many-faces-of-patient-engagement\/<\/a><\/small><\/p><p><small>[2] IAN WORDEN The Path To Increased Patient Engagement Lies In The Definition<a title=\"http:\/\/www.betterpatientengagement.com\/2013\/03\/03\/the-path-to-increased-patient-engagement-lies-in-the-definition\" href=\"http:\/\/www.betterpatientengagement.com\/2013\/03\/03\/the-path-to-increased-patient-engagement-lies-in-the-definition\" target=\"_blank\" rel=\"noopener\">http:\/\/www.betterpatientengagement.com\/2013\/03\/03\/the-path-to-increased-patient-engagement-lies-in-the-definition<\/a>. MARCH 3, 2013<\/small><\/p><p><small>[3] <a title=\"http:\/\/health.gov\/communication\/literacy\/quickguide\/factsliteracy.htm\" href=\"http:\/\/health.gov\/communication\/literacy\/quickguide\/factsliteracy.htm\" target=\"_blank\" rel=\"noopener\">http:\/\/health.gov\/communication\/literacy\/quickguide\/factsliteracy.htm<\/a><\/small><\/p><p><small>[4] <a title=\"http:\/\/www.cdc.gov\/healthliteracy\/learn\/\" href=\"http:\/\/www.cdc.gov\/healthliteracy\/learn\/\" target=\"_blank\" rel=\"noopener\">http:\/\/www.cdc.gov\/healthliteracy\/learn\/<\/a><\/small><\/p><p><small>[5] <a title=\"http:\/\/www.hrsa.gov\/publichealth\/healthliteracy\/healthlitabout.html\" href=\"http:\/\/www.hrsa.gov\/publichealth\/healthliteracy\/healthlitabout.html\" target=\"_blank\" rel=\"noopener\">http:\/\/www.hrsa.gov\/publichealth\/healthliteracy\/healthlitabout.html<\/a><\/small><\/p><p><small>[6] Coulter A. Patient engagement--what works? J Ambul Care Manage. 2012 Apr-Jun;35(2):80-9. doi: 10.1097\/JAC.0b013e318249e0fd .<\/small><\/p><p><small>[7] A New Definition of Patient Engagement: What is Engagement and Why is it Important? Center for Advanc ing Health 2010<a title=\"http:\/\/www.cfah.org\/pdfs\/CFAH_Engagement_Behavior_Framework_current.pdf\" href=\"http:\/\/www.cfah.org\/pdfs\/CFAH_Engagement_Behavior_Framework_current.pdf\" target=\"_blank\" rel=\"noopener\">http:\/\/www.cfah.org\/pdfs\/CFAH_Engagement_Behavior_Framework_current.pdf<\/a><\/small><\/p><p><small>[8] <a title=\"https:\/\/marketplace.cms.gov\/technical-assistance-resources\/c2c-roadmap.pdf\" href=\"https:\/\/marketplace.cms.gov\/technical-assistance-resources\/c2c-roadmap.pdf\" target=\"_blank\" rel=\"noopener\">https:\/\/marketplace.cms.gov\/technical-assistance-resources\/c2c-roadmap.pdf<\/a><\/small><\/p><p><small>[9] <a title=\"http:\/\/www.nih.gov\/clearcommunication\/healthliteracy.htm\" href=\"http:\/\/www.nih.gov\/clearcommunication\/healthliteracy.htm\" target=\"_blank\" rel=\"noopener\">http:\/\/www.nih.gov\/clearcommunication\/healthliteracy.htm<\/a><\/small><\/p><p><small>[10] <a title=\"https:\/\/www.nlm.nih.gov\/medlineplus\/\" href=\"https:\/\/www.nlm.nih.gov\/medlineplus\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.nlm.nih.gov\/medlineplus\/<\/a><\/small><\/p><p><small>[11] <a title=\"http:\/\/www.trustortrash.org\/\" href=\"http:\/\/www.trustortrash.org\/\" target=\"_blank\" rel=\"noopener\">http:\/\/www.trustortrash.org\/<\/a><\/small><\/p><p><small>[12] <a title=\"http:\/\/nnlm.gov\/outreach\/consumer\/hlthlit.html\" href=\"http:\/\/nnlm.gov\/outreach\/consumer\/hlthlit.html\" target=\"_blank\" rel=\"noopener\">http:\/\/nnlm.gov\/outreach\/consumer\/hlthlit.html<\/a><\/small><\/p><\/div><p>[\/et_pb_text] [\/et_pb_column] [et_pb_column type=\"1_3\" _builder_version=\"4.17.4\" _module_preset=\"default\" custom_padding=\"6%||||false|false\" global_colors_info=\"{}\"][et_pb_video src=\"https:\/\/www.youtube.com\/watch?v=aSBUDSqXUks&list=PLrLBy23tjd-J7OzSmi6pn1nssfDcCsHob&index=11\" admin_label=\"YouTube Video\" _builder_version=\"4.17.4\" _module_preset=\"default\" global_colors_info=\"{}\"][\/et_pb_video][et_pb_button button_url=\"\/asthma-allergy-research\/asthma-research\/\" button_text=\"Asthma Research\" button_alignment=\"center\" admin_label=\"Asthma Research Button\" _builder_version=\"4.17.4\" _module_preset=\"default\" custom_button=\"on\" button_use_icon=\"off\" custom_css_main_element=\"width:100%;\" global_module=\"613\" global_colors_info=\"{}\"][\/et_pb_button][et_pb_button button_url=\"\/asthma-allergy-research\/allergy-research\/\" button_text=\"Allergy Research\" button_alignment=\"center\" admin_label=\"Allergy Research Button\" _builder_version=\"4.17.4\" _module_preset=\"default\" custom_button=\"on\" button_bg_color=\"#008c99\" custom_css_main_element=\"width:100%;\" global_module=\"598\" saved_tabs=\"all\" global_colors_info=\"{}\" button_text__hover_enabled=\"off|desktop\"][\/et_pb_button][et_pb_text admin_label=\"Support Our Work Blurb\" module_class=\"sidebar-blurb\" _builder_version=\"4.17.4\" _module_preset=\"default\" text_text_color=\"#505050\" text_font_size=\"16px\" text_line_height=\"1.5em\" link_font=\"|600||on|||||\" link_text_align=\"left\" link_text_color=\"#692d87\" link_font_size=\"16px\" header_4_font=\"|600|||||||\" header_4_text_align=\"left\" header_4_text_color=\"#692d87\" header_4_font_size=\"20px\" background_image=\"2725\" background_size=\"initial\" background_position=\"top_left\" global_module=\"601\" saved_tabs=\"all\" global_colors_info=\"{}\"]<\/p><h4>Support Our Work<\/h4><p>Over the past 15 years, there have been moderate advances in U.S. public policy, health care and research, but racial gaps in asthma outcomes have not changed. Minority groups continue to bear disproportionate hardship in managing asthma.<\/p><p><a href=\"\/get-involved\/make-a-donation\/\" target=\"_blank\" rel=\"noopener\">Donate Today ><\/a><\/p><p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-4021","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v28.5 (Yoast SEO v28.5) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Patient and Family Engagement | AAFA.org<\/title>\n<meta name=\"description\" content=\"AAFA seeks to improve treatment options and protect quality of life for people with asthma and allergic diseases.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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