CINXE.COM
Fully Engaged: The Importance of Involving Patients in Research | NIH HEAL Initiative
<!DOCTYPE html> <html lang="en" dir="ltr" prefix="og: https://ogp.me/ns#"> <head> <meta charset="utf-8" /> <meta name="description" content="The NIH HEAL Initiative conducted a seminar on patient engagement in pain research on August 26, 2020, for all those who are interested." /> <link rel="canonical" href="https://heal.nih.gov/news/stories/importance-of-patient-engagement" /> <link rel="image_src" href="/files/heal-logo-social.png" /> <meta property="og:site_name" content="NIH HEAL Initiative" /> <meta property="og:type" content="website" /> <meta property="og:url" content="https://heal.nih.gov/news/stories/importance-of-patient-engagement" /> <meta property="og:description" content="The NIH HEAL Initiative conducted a seminar on patient engagement in pain research on August 26, 2020." /> <meta property="og:image" content="https://heal.nih.gov/files/heal-logo-social.png" /> <meta property="og:image:url" content="https://heal.nih.gov/files/heal-logo-social.png" /> <meta property="og:updated_time" content="Tue, 12/31/2024 - 11:24am" /> <meta property="article:published_time" content="Tue, 08/18/2020 - 11:31am" /> <meta property="article:modified_time" content="Tue, 12/31/2024 - 11:24am" /> <meta name="twitter:card" content="summary_large_image" /> <meta name="twitter:description" content="The NIH HEAL Initiative conducted a seminar on patient engagement in pain research on August 26, 2020." /> <meta name="twitter:creator" content="@NIH" /> <meta name="twitter:image" content="https://heal.nih.gov/files/heal-logo-social.png" /> <meta name="Generator" content="Drupal 10 (https://www.drupal.org)" /> <meta name="MobileOptimized" content="width" /> <meta name="HandheldFriendly" content="true" /> <meta name="viewport" content="width=device-width, initial-scale=1.0" /> <link rel="icon" href="/files/favicon.ico" type="image/vnd.microsoft.icon" /> <script>window.a2a_config=window.a2a_config||{};a2a_config.callbacks=[];a2a_config.overlays=[];a2a_config.templates={};</script> <title>Fully Engaged: The Importance of Involving Patients in Research | NIH HEAL Initiative</title> <link rel="stylesheet" media="all" href="/files/css/css_RvYEMQu8ScRxBOfUxCxN98m7AwDBaySydS8hlewzzsQ.css?delta=0&language=en&theme=particle&include=eJxFymEOwyAIBeALqRypwcKmGYpBXdfbLy5t9oe89z2QaCjWE_AK4WFahyM9qijSJrm-NsHIwga3-qX-Uj8SF3b8GUuBbDaUcFXX0PBp2FK_l7-EWduMkntiWo8j78Kwq7HrZx9cIGJn9858dPjdUJSm8BeBwUc9" /> <link rel="stylesheet" media="all" href="/files/css/css_Kzcx5y8_UgmvOm2su6202zfZz3qqdNhdBCeZjOratTU.css?delta=1&language=en&theme=particle&include=eJxFymEOwyAIBeALqRypwcKmGYpBXdfbLy5t9oe89z2QaCjWE_AK4WFahyM9qijSJrm-NsHIwga3-qX-Uj8SF3b8GUuBbDaUcFXX0PBp2FK_l7-EWduMkntiWo8j78Kwq7HrZx9cIGJn9858dPjdUJSm8BeBwUc9" /> <link rel="preconnect" href="https://fonts.gstatic.com/" crossorigin="anonymous"> <link rel="stylesheet" href="https://cdnjs.cloudflare.com/ajax/libs/font-awesome/6.5.1/css/solid.min.css"> <link rel="stylesheet" href="https://cdnjs.cloudflare.com/ajax/libs/font-awesome/6.5.1/css/brands.min.css"> <link href="https://fonts.googleapis.com/css?family=Montserrat:400,600,700&display=swap" rel="stylesheet"> <!-- Global site tag (gtag.js) - Google Analytics --> <script async src="https://www.googletagmanager.com/gtag/js?id=UA-147034615-1"></script> <meta name="msvalidate.01" content="C17405549FB53FD60915A09433C78FF3" /> <meta http-equiv="X-UA-Compatible" content="IE=EmulateIE8"> <meta name="viewport" content="width=device-width, initial-scale=1, maximum-scale=1"> <script> window.dataLayer = window.dataLayer || []; function gtag(){dataLayer.push(arguments);} gtag('js', new Date()); gtag('config', 'UA-147034615-1'); </script> <!-- Google Tag Manager --> <script>(function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start': new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0], j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src= 'https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f); })(window,document,'script','dataLayer','GTM-W8TVZ6J');</script> <!-- End Google Tag Manager --> <!-- DAP --> <script language="javascript" id="_fed_an_ua_tag" src="https://dap.digitalgov.gov/Universal-Federated-Analytics-Min.js?agency=HHS&subagency=NIH&exts=doc,docx,xls,xlsx,xlsm,ppt,pptx,exe,zip,pdf,js,txt,csv,dxf,wmv,jpg,wma,mov,avi,mp3,mp4,csv"></script> <!-- End DAP --> </head> <body class="fout-fix" data-spy="scroll" data-target="#scrollnav"> <a href="#main-content" class="visually-hidden focusable"> Skip to main content </a> <!-- Google Tag Manager (noscript) --> <noscript><iframe src="https://www.googletagmanager.com/ns.html?id=GTM-W8TVZ6J" height="0" width="0" style="display:none;visibility:hidden"></iframe></noscript> <!-- End Google Tag Manager (noscript) --> <div class="dialog-off-canvas-main-canvas" data-off-canvas-main-canvas> <div class="mobile-overlay" id="overlay" aria-hidden="true"></div> <div id="header-container" class="header-container"> <div class="ribbon fluid-container"> <div class="container"> <div class="row"> <div class="col-sm-12"> <div class="ribbon-links"> <a href="http://www.hhs.gov/" class=""> <img src="/assets/hhs-logo.png" alt="U.S. Department of Health & Human Services website"/> U.S. Department of Health & Human Services </a> <img src="/assets/delimiter-arrow.png" alt="" role="presentation"/> <a href="https://www.nih.gov/">National Institutes of Health</a> </div> </div> </div> </div> </div> </div> </div> <div class="layout-container"> <header class="container navbar navbar-light navbar"> <div class="navbar-header-btns"> <button class="menu-btn" type="button" class="" aria-expanded="false">Menu</button> <button class='searchBtnMobile' aria-label="search-toggle"></button> </div> <a href="/" class="navbar-logo gtm-header-home" title="Navbar Logo Title"><img src="../../../assets/NIH_HEAL_Color.svg" alt="Navbar Logo Alt"></a> <form class="search-menu form-inline d-lg-block" action="https://search.usa.gov/search" accept-charset="UTF-8" method="get"> <input name="utf8" type="hidden" value="✓"> <input type="hidden" name="affiliate" id="affiliate" value="heal"> <div class="input-group"> <input class="search-input form-control" type="search" placeholder="Search" aria-label="Search heal.nih.gov" name="query"> <div class="input-group-append"> <button type="submit" class="btn btn gtm-header-search btn-tertiary">Search</button> </div> </div> </form> <nav role="navigation" aria-labelledby="block-particle-mainnavigation-menu" class="container navbar navbar-expand-lg navbar-light primary-navigation"> <h2 class="visually-hidden" id="block-particle-mainnavigation-menu">Main navigation</h2> <ul class="no-bullets menu-level-0"> <li class="menu-item menu-item--expanded no-bullets nav-list-item-0"> <a href="/about" class="menu-link gtm-topnav-link" tabindex="0" data-drupal-link-system-path="node/43151">About</a> <button class="expand-btn" aria-label="expand-button"></button> <ul class="no-bullets menu-level-1"> <li class="menu-item no-bullets nav-list-item-1"> <a href="/about/why-heal" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/43131">Why HEAL?</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/about/opioid-crisis" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/43136">The Opioid Crisis</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/about/impact" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/42501">Making a Difference</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/about/nih-heal-initiative-leadership" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/43146">NIH HEAL Initiative Leadership</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/about/nih-heal-initiative-annual-report-budget" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/43141">Annual Report and Budget</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/about/strategic-plan" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/46921">Strategic Planning</a> </li> </ul> </li> <li class="menu-item menu-item--expanded no-bullets nav-list-item-0"> <a href="/research" class="menu-link gtm-topnav-link" tabindex="0" data-drupal-link-system-path="node/16">Research</a> <button class="expand-btn" aria-label="expand-button"></button> <ul class="menu-level-1 no-bullets"> <li class="menu-item menu-item--expanded no-bullets nav-list-item-1"> <a href="/research/research-to-practice" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/61">Translation of Research to Practice for the Treatment of Opioid Addiction</a> <button class="expand-btn" aria-label="expand-button"></button> <ul class="no-bullets menu-level-2"> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/research-to-practice/brim" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/106">Behavioral Research to Improve Medication-Based Treatment</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/research-to-practice/continuum-care-hospitalized-patients-opioid-use-disorder" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/42151">The Continuum of Care in Hospitalized Patients with Opioid Use Disorder and Infectious Complications of Drug Use</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/research-to-practice/enhancing-clinical-trials-network" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/96">Enhancing the National Drug Abuse Treatment Clinical Trials Network to Address Opioids</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/research-to-practice/harm-reduction-approaches-reduce-overdose-deaths" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/41416">Harm Reduction Research Network</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/research-to-practice/healing-communities" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/91">HEALing Communities Study</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/research-to-practice/delivery-healthcare-services-polysubstance-use" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/42146">Improving Delivery of Healthcare Services for Polysubstance Use</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/research-to-practice/jcoin" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/101">Justice Community Opioid Innovation Network</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/research-to-practice/native-collective-research-effort-enhance-wellness-overdose-substance-mental-health-pain" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/42586">Native Collective Research Effort to Enhance Wellness (N CREW) Program: Addressing Overdose, Substance Use, Mental Health, and Pain</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/research-to-practice/optimizing-addiction-services" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/44086">Optimizing the Quality, Reach, and Impact of Addiction Services</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/research-to-practice/research-recovery-network" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/39646">Recovery Research Networks</a> </li> </ul> </li> <li class="menu-item menu-item--expanded no-bullets nav-list-item-1"> <a href="/research/new-strategies" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/66">New Strategies to Prevent and Treat Opioid Addiction</a> <button class="expand-btn" aria-label="expand-button"></button> <ul class="menu-level-2 no-bullets"> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/new-strategies/care-polysubstance-use-primary-care" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/42126">Collaborative Care for Polysubstance use in Primary Care Settings (Co-Care)</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/new-strategies/optimizing-care" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/111">Optimizing Care for People with Opioid Use Disorder and Mental Health Conditions</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/new-strategies/duration-retention-discontinuation" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/126">Optimizing the Duration, Retention, and Discontinuation of Medication Treatment for Opioid Use Disorder</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/new-strategies/preventing-opioid-use-disorder" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/116">Preventing Opioid Use Disorder</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/new-strategies/prevent-progression" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/131">Prevention of Progression to Moderate or Severe Opioid Use Disorder</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/new-strategies/sleep-dysfunction" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/121">Sleep Dysfunction as a Core Feature of Opioid Use Disorder and Recovery</a> </li> </ul> </li> <li class="menu-item menu-item--expanded no-bullets nav-list-item-1"> <a href="/research/infants-and-children" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/71">Enhanced Outcomes for Infants and Children Exposed to Opioids</a> <button class="expand-btn" aria-label="expand-button"></button> <ul class="menu-level-2 no-bullets"> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/infants-and-children/act-now" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/136">Advancing Clinical Trials in Neonatal Opioid Withdrawal (ACT NOW)</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/infants-and-children/opioid-exposure-during-pregnancy" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/44096">The Biology of Opioid Exposure During Pregnancy and Effects on Early Neuro-Behavioral Development</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/infants-and-children/healthy-brain" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/141">HEALthy Brain and Child Development Study (HBCD)</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/infants-and-children/virtual-assessments-developmental-trajectories" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/44101">Virtual Assessments to Understand Developmental Trajectories of Substance Use Exposure</a> </li> </ul> </li> <li class="menu-item menu-item--expanded no-bullets nav-list-item-1"> <a href="/research/therapeutic-options" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/76">Novel Therapeutic Options for Opioid Use Disorder and Overdose</a> <button class="expand-btn" aria-label="expand-button"></button> <ul class="menu-level-2 no-bullets"> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/therapeutic-options/immunotherapies" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/151">Development of Novel Immunotherapeutics for Opioid Addiction</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/therapeutic-options/focusing-development" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/146">Focusing Medication Development to Prevent and Treat Opioid Use Disorders and Overdose</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/therapeutic-options/oral-complications-buprenorphine" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/44106">Oral Complications Arising From Pharmacotherapies to Treat Opioid Use Disorders</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/therapeutic-options/rapid-assessment-emerging-opioid-threats" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/44111">Rapidly Assessing the Public Health Impact of Emerging Opioid Threats</a> </li> </ul> </li> <li class="menu-item menu-item--expanded no-bullets nav-list-item-1"> <a href="/research/clinical-research" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/81">Clinical Research in Pain Management</a> <button class="expand-btn" aria-label="expand-button"></button> <ul class="menu-level-2 no-bullets"> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/clinical-research/health-equity-pain-management" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/42106">Advancing Health Equity in Pain Management</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/clinical-research/pain-signatures" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/186">Acute to Chronic Pain Signatures Program</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/clinical-research/back-pain" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/161">Back Pain Consortium Research Program</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/clinical-research/biomarkers" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/191">Discovery and Validation of Biomarkers, Endpoints and Signatures for Pain Conditions</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/clinical-research/eppic-net" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/176">Early Phase Pain Investigation Clinical Network (EPPIC-Net)</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/clinical-research/hemodialysis" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/181">Integrated Approach to Pain and Opioid Use in Hemodialysis Patients</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/clinical-research/pain-management-research" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/166">Pain Management Effectiveness Research Network</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/clinical-research/prism" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/171">Pragmatic and Implementation Studies for the Management of Pain to Reduce Opioid Prescribing (PRISM)</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/clinical-research/chronic-pain-rural-populations" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/44091">Prevention and Management of Chronic Pain in Rural Populations</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/clinical-research/integrative-management-chronic-pain" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/39621">Reducing Opioid-Related Harms to Treat Chronic Pain (IMPOWR and MIRHIQL)</a> </li> </ul> </li> <li class="menu-item menu-item--expanded no-bullets nav-list-item-1"> <a href="/research/preclinical-translational" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/86">Preclinical and Translational Research in Pain Management</a> <button class="expand-btn" aria-label="expand-button"></button> <ul class="menu-level-2 no-bullets"> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/preclinical-translational/optimization-non-addictive-therapies" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/206">Development and Optimization of Non-Addictive Therapies to Treat Pain</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/preclinical-translational/novel-targets" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/216">Discovery and Validation of Novel Targets for Safe and Effective Treatment of Pain</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/preclinical-translational/integrated-research" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/44116">Integrated Basic and Clinical Team-Based Research in Pain</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/preclinical-translational/screening-platform" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/211">Preclinical Screening Platform for Pain</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/preclinical-translational/restoring-joint-health-function-reduce-pain" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/42136">Restoring Joint Health and Function to Reduce Pain Consortium (RE-JOIN)</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/preclinical-translational/discoveries-into-devices" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/201">Translating Discoveries into Effective Devices to Treat Pain</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/preclinical-translational/novel-drugs-screening-platforms" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/196">Translational Research to Advance Testing of Novel Drugs and Human Cell-Based Screening Platforms to Treat Pain and Opioid Use Disorder</a> </li> </ul> </li> <li class="menu-item menu-item--expanded no-bullets nav-list-item-1"> <a href="/research/cross-cutting-research" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/40331">Cross-Cutting Research</a> <button class="expand-btn" aria-label="expand-button"></button> <ul class="menu-level-2 no-bullets"> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/cross-cutting-research/real-time-opioid-pain-management-data" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/42116">Leveraging Existing and Real-Time Opioid and Pain Management Data </a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/cross-cutting-research/small-business-programs" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/42111">Small Business Programs </a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/cross-cutting-research/stigma-pain-management-opioid-disorder" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/40256">Stigma in Pain Management and Opioid Use Disorder</a> </li> <li class="menu-item no-bullets nav-list-item-2"> <a href="/research/cross-cutting-research/translating-data-action-prevent-overdose" class="menu-link gtm-topnav-third" tabindex="0" data-drupal-link-system-path="node/42121">HEAL Data2Action (HD2A)</a> </li> </ul> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/research/training-next-generation-researchers" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/46831">Training the Next Generation of Researchers in HEAL</a> </li> </ul> </li> <li class="menu-item menu-item--expanded no-bullets nav-list-item-0"> <a href="/data" class="menu-link gtm-topnav-link" tabindex="0" data-drupal-link-system-path="node/44206">Data</a> <button class="expand-btn" aria-label="expand-button"></button> <ul class="no-bullets menu-level-1"> <li class="menu-item no-bullets nav-list-item-1"> <a href="/data/heal-data-ecosystem" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/38836">About the HEAL Data Ecosystem</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/data/complying-heal-data-sharing-policy" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/39216">Complying With the HEAL Data Sharing Policy</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/data/common-data-elements" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/39116">Common Data Elements (CDEs) Program</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/data/common-data-elements-repository" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/42871">Common Data Elements (CDEs) Repository</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/data/ecosystem-events-outreach" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/40321">HEAL Data Ecosystem Events and Outreach</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/data/public-access-data" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/51">HEAL Public Access and Data Sharing</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/data/data-ecosystem-collective-board" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/40951">HEAL Data Ecosystem Collective Board</a> </li> </ul> </li> <li class="menu-item menu-item--expanded no-bullets nav-list-item-0"> <a href="/funding" class="menu-link gtm-topnav-link" tabindex="0" data-drupal-link-system-path="node/221">Funding</a> <button class="expand-btn" aria-label="expand-button"></button> <ul class="menu-level-1 no-bullets"> <li class="menu-item no-bullets nav-list-item-1"> <a href="/funding/awarded" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/881">Funded Projects</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/funding/open" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/871">Open Funding Opportunities</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/funding/closed" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/876">Closed Funding Opportunities</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/funding/research-concepts" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/40206">Research Concepts</a> </li> </ul> </li> <li class="menu-item menu-item--expanded no-bullets nav-list-item-0"> <a href="/news" class="menu-link gtm-topnav-link" tabindex="0" data-drupal-link-system-path="node/226">News & Events</a> <button class="expand-btn" aria-label="expand-button"></button> <ul class="menu-level-1 no-bullets"> <li class="menu-item no-bullets nav-list-item-1"> <a href="/news/news" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/33666">News</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/news/events" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/33671">Events</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/news/events/headliners" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/42551">Headliners Webinar Series</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/news/stories" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/33676">Research Spotlights</a> </li> <li class="menu-item no-bullets nav-list-item-1"> <a href="/videos" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/36351">Videos</a> </li> </ul> </li> <li class="menu-item menu-item--expanded no-bullets nav-list-item-0"> <a href="/resources" class="menu-link gtm-topnav-link" tabindex="0" data-drupal-link-system-path="node/231">Resources</a> <button class="expand-btn" aria-label="expand-button"></button> <ul class="menu-level-1 no-bullets"> <li class="menu-item no-bullets nav-list-item-1"> <a href="/resources/engagement" class="menu-link gtm-topnav-drop" tabindex="0" data-drupal-link-system-path="node/43166">Patient and Community Engagement</a> </li> </ul> </li> </ul> </nav> </header> <div data-drupal-messages-fallback class="hidden"></div> <header role="banner"> <div class="background-jumbotron masthead-jumbotron text-clip jumbotron jumbotron-fluid pattern" > <div class="container-fluid"> <h1><span>Fully Engaged: The Importance of Involving Patients in Research</span> </h1> <div class="row justify-content-center subtitle"> <div class="col-xl-8 col-lg-8 col-sm-12 col-xs-12"> <p>NIH HEAL Initiative hosts August 26 workshop on patient engagement in pain research</p> </div> </div> </div> </div> </header> <main role="main"> <div class="container"> <a id="main-content" tabindex="-1"></a> <div class="row"> <div class="col-sm-12 breadcrumb-col col-md-7"> <div id="block-particle-breadcrumbs"> <nav aria-label="breadcrumb" role="navigation"> <ol class="breadcrumb"> <li class="breadcrumb-item gtm-breadcrumb"><a href="/" class="gtm-breadcrumb">Home</a></li> <li class="breadcrumb-item gtm-breadcrumb"><a href="/news" class="gtm-breadcrumb">News & Events</a></li> <li class="breadcrumb-item gtm-breadcrumb"><a href="/news/stories" class="gtm-breadcrumb">Research Spotlights</a></li> <li class="breadcrumb-item active is-active gtm-breadcrumb" aria-current="page">Fully Engaged: The Importance of Involving Patients in Research</li> </ol> </nav> </div> </div> <div class="col-sm-12 col-md-5"> <div id="block-addtoanybuttons"> <div class="pattern"> <div class="display-pattern social-container d-flex row"> <div class-="social-share"> <span class="label social-label text-uppercase font-weight-bold pr-3">Share this article</span> <span class="a2a_kit a2a_kit_size_25 " data-a2a-url="https://heal.nih.gov/news/stories/importance-of-patient-engagement" data-a2a-title="Fully Engaged: The Importance of Involving Patients in Research"><a class="a2a_button_facebook btn social-share-button" aria-label="social-facebook"></a><a class="a2a_button_x btn social-share-button" aria-label="social-twitter"></a><a class="a2a_button_linkedin btn social-share-button" aria-label="social-linkedin"></a><a class="a2a_button_email btn social-share-button" aria-label="social-email"></a></span></div> </div> </div> </div> </div> </div> </div> <div class="layout-content"> <div> <div id="block-particle-content"> <div> <div class="paragraph paragraph--type--basic-content paragraph--view-mode--default"> <div class="container overflow-auto"> <div class='basic-content content-align-left full pattern'> <div class='col-xl-12 ' style=''> <div class=""> <div> <figure class='img-fluid figure align-right w-50'> <div> <div class="visually-hidden field-label">Image</div> <img loading="lazy" src="/files/Patient%20Engagement.jpg" width="640" height="480" alt="Patient Engagement" class="img-fluid" /> </div> </figure> </div> <div> <p>“The secret of the care of the patient is caring for the patient.”</p><p>So <a href="https://jamanetwork.com/journals/jama/article-abstract/245777">wrote</a> Francis Peabody, M.D. in the March 19, 1927 issue of the <em>Journal of the American Medical Association</em>. Directed to medical students nearly 100 years ago, Peabody’s maxim is still timely and elegantly simple: The healing process is as much about a patient’s symptoms and lab values as it is about how he or she thinks and feels.</p><p>Paul Kimmel, M.D., of the National Institute of the Diabetes and Digestive and Kidney Diseases (NIDDK), thinks often about Peabody’s wisdom; he makes the case that including patients directly and meaningfully in research is the best and only route to findings that will improve patient care. Kimmel, who works on finding treatments for kidney diseases, is quick to note that expecting patients to participate in research—without first asking them what they think and understand about their illness, treatment priorities and preferences—seems futile.</p><p>“I’ve never been on dialysis, nor have I experienced life-altering pain typical of some of these terrible conditions,” says Kimmel, adding that he’s also a White male, whereas patients with kidney disease are disproportionately Black/African American.</p><p>Absent the personal experience of living with a disease, Kimmel asserts, scientists have limited information about what it will take to treat them; patient voices need to be part of research at every stage. That includes planning how studies are done, developing culturally appropriate recruitment materials, helping spread the word about newly developed treatments, and more.</p><p>The <a href="https://heal.nih.gov/">Helping to End Addiction Long-term Initiative<sup>®</sup>, or NIH HEAL Initiative<sup>®</sup></a> is <a href="https://www.heal.nih.gov/about/director/patient-engagement">dedicated to patient engagement</a> that can help bridge the gap between a treatment’s efficacy (whether a treatment <em>can</em> work) and effectiveness (whether it actually <em>will</em> work in the real world where actual patients live). NIH is hosting a <a href="https://heal.nih.gov/events/2020-08/patient-engagement-workshop">virtual workshop</a> on August 26, 2020 to discuss and share best practices for working collaboratively with patients in studies of new therapies for pain. <a href="https://heal.nih.gov/events/2020-08/patient-engagement-workshop">Register here.</a></p><h2><br>Words matter</h2><p>Even recently, scientists referred to people who participated in clinical research as “subjects”—hardly a welcoming term. Today, the research world has come a long way. Having patients as true colleagues in research is taking shape as the best way to do solid science.</p><p>Aleksandra Zgierska, M.D., Ph.D., is a physician scientist at Pennsylvania State University College of Medicine and an NIH HEAL Initiative researcher who studies opioid use in pregnant women. She describes her medical training as seeing diseases mostly through a basic science lens: via disrupted genes and molecules that lead to faulty cells, tissues, and organs, and that could be “fixed” through medical treatments.</p><p>But as Zgierska’s career evolved—she is now an addiction and chronic pain researcher— she began to appreciate that “my patients’ voices were loud and clear,” and she knew she wouldn’t get very far without patient buy-in for her research to find new treatments to help them.</p><p>“I realized we absolutely had to consider the ‘end-user’.”</p><p>Zgierska recalls one instance several years ago when she and her colleagues were planning a clinical trial to test the value of mindfulness and cognitive behavioral therapy to alleviate chronic low back pain. They sought affirmation from patients on what the scientists considered a really clever name for the study: “Healthy Mind, Healthy Back.”</p><p>The patient advisors for this study didn’t agree. They considered the name stigmatizing and condescending.</p><p>“What’s wrong with our minds?” “Is it our own fault we have back pain?” Working together, scientists and patients came up with an option everyone was happy with: Strategies to Assist with Management of Pain (STAMP).<br><br>It was a turning point for Zgierska. Together, the <a href="https://www.fammed.wisc.edu/wp-content/uploads/2019/09/PCORI-STAMP-Engagement-poster-09-17-09.pdf">researchers and patients</a> <span class="link-label label-file label-file-pdf" aria-label="File Type and Size">pdf 1.12 MB</span> worked not only to create a better name, but also to find better ways to recruit and retain patients into the study. These patient advisors also counseled Zgierska and her team on how to steer clear of pain/opioid stigma as well as better ways to collect data. The clinical trial is now funded by the <a href="https://www.pcori.org/">Patient-Centered Outcomes Research Institute</a>, which has funded <a href="https://www.pcori.org/engagement/engagement-literature">hundreds of projects</a> in which patients have been included in community forums, advisory panels, and as co-investigators alongside the study scientists.</p><p>Zgierska interacts frequently with patients as allies in her research studies, an investment that should be extremely important for her upcoming pilot study involving pregnant and postpartum women, many of whom have used opioids. Recruiting these women into research is very difficult, she explains, due to their serious concerns about consequences facing those who use drugs, including possible incarceration or losing custody of a child.</p><p>She has developed an innovative strategy to make recruitment less scary for her patients as well as to also train people in recovery to serve as patient navigators who will be permanent members of her research team. Zgierska recently published a <a href="https://pubmed.ncbi.nlm.nih.gov/32482954/">paper</a> describing how to talk about addiction effectively, without stigma, and patients are co-authors.</p><p>“It’s all about trust,” says Zgierska. “I’m hoping that peer support and navigation, made stronger through shared lived experiences, will make it easier for individuals with opioid use disorder to participate in research that can help them and others.” </p><h2>Putting patients first</h2><p>“Is this approach realistic, and will it help me?” or “What are you going to measure and is that important to me?” are key questions patients want answered before getting involved in a research study. This is especially relevant for studies of “invisible” conditions like chronic pain, says Christin Veasley, who has lived with chronic pain since her teens and is a pain research and engagement patient advocate.</p><p>“In the past, pain researchers focused—almost exclusively—on measuring pain severity,” says, “but a number on a pain scale only tells a part of anyone’s individual story.”</p><p>Although pain intensity matters, Veasley explains, its importance pales in comparison to function, sleep, thinking clearly, and having a good quality of life. Veasley, who serves as a patient advisor on Zgierska’s study, said that it was engagement and input from patient partners that led to a key decision to expand study measures to include function and quality of life.</p><p>“I think everybody agrees that engaging patients meaningfully is the right thing to do,” says Veasley, “but because it is an emerging practice, specific guidance for the pain community isn’t available, and many researchers haven’t been trained in how to do it well.”</p><p>The NIH HEAL workshop aims to garner successful strategies to guide the pain research community toward making patient engagement routine, as it has come to be in other areas of research such as in addiction research.</p><p>Fortunately, resources from other health areas, such as <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6005117/">cancer</a> and Parkinson’s, are available to help scientists learn about the principles of patient engagement and to translate best practices into their pain studies. Many universities offer consulting services on working with stakeholders, including patients. Scientists within the nationwide NIH-funded Clinical and Translational Science Award program have created the <a href="https://pubmed.ncbi.nlm.nih.gov/26107879/">Community Engagement Studio</a> project, a structured approach to obtaining meaningful input from stakeholders to inform research. In 2019, the FDA issued <a href="https://www.fda.gov/media/124390/download">The Voice of the Patient</a>, guidance on how to include patient input in drug development.</p><h2>A seat at the table</h2><p>Like Aleksandra Zgierska, Paul Kimmel believes that doing clinical research without patients in decision-making roles makes little sense: a sentiment driven home to him a few years ago.</p><p>In 2017, Kimmel and his NIDDK colleagues launched a nationwide study of kidney donors to better understand concerns about the health of recipients receiving donor organs that might transmit risk of disease. People who have a particular genetic signature have a higher risk for kidney disease—and the people who have this genetic signature are almost exclusively of African descent.</p><p>The imbalance of racial/ethnic backgrounds and cultural experiences between patients in the study population and the scientists was glaring, and Kimmel knew he had to do something about it.</p><p>Recognizing the importance of having study leadership from people whose lived experiences align with those of participants, he helped put together a Community Advisory Council that included two African American patients with kidney disease (or their family members) from each research site.</p><p>“This group provides guidance on overall design, input on how to do the study, and advice about recruiting patients, and it’s been tremendously helpful for doing good science,” Kimmel says.</p><p>For this study, Kimmel involved patients in the research process from the very beginning, inviting patients to contribute to the first planning workshop and then preparing them to participate alongside the scientific team.</p><p>On the first day of the research meeting, all of the scientists (and their trainees) took their seats at the main table in the conference room. No seats remained, so patients sat in chairs away from the table, mostly in the back.</p><p>Seeing immediately that this structure wasn’t inclusive, Kimmel invited all patients to move to the main table, and he instructed scientists to send their trainees to the surrounding chairs. He also set ground rules, advising everyone in the room: “If you don’t understand something, the meeting will stop. Raise your hand and ask for it to be explained.”</p><p>“The whole atmosphere changed: it was the most amazing thing I’ve ever seen.” Kimmel described. “From that point on, we talked about ‘us,’ not ‘them.’”</p><p>The NIH HEAL Initiative wants to learn from examples of successful strategies used by Kimmel, Zgierska, and others that meet patients where they are and invite them to join the research process. The August 26, 2020 workshop will be the first in a series to explore this important aspect of pain and addiction research, essential to the success of the initiative’s mission.</p> </div> </div> </div> </div> </div> </div> <div class="paragraph paragraph--type--rps-rfa paragraph--view-mode--default"> <div class="container"> <div class="views-element-container form-group"><div class="border border-royal-heath padding-10 js-view-dom-id-b2a5fc498a1238c6bf7bdbdb1cae4e387350aa6e00554660ac02654da43cfdf8"> <div class="views-row"><span class="views-field views-field-field-research-focus-area"><span class="views-label views-label-field-research-focus-area">Research Focus Area: </span><div class="field-content"><a href="/research/research-to-practice" hreflang="en">Translation of Research to Practice for the Treatment of Opioid Addiction</a>, <a href="/research/clinical-research" hreflang="en">Clinical Research in Pain Management</a>, <a href="/research/new-strategies" hreflang="en">New Strategies to Prevent and Treat Opioid Addiction</a>, <a href="/research/preclinical-translational" hreflang="en">Preclinical and Translational Research in Pain Management</a>, <a href="/research/cross-cutting-research" hreflang="en">Cross-Cutting Research</a></div></span></div> </div> </div> </div> </div> <div class="paragraph paragraph--type--cards paragraph--view-mode--default"> <div class="container"> <div class="row card-grid pattern"> <div class='col-lg-4 col-md-6 col-sm-12'> <div class='border-none card'> <div class='card-img-top'> <div> <div class="visually-hidden field-label">Image</div> <img loading="lazy" src="/files/NINDS_Card.jpg" alt="National Institute of Neurological Disorders and Stroke Logo" class="img-fluid" /> </div> </div> <div class='card-body'> <h3 class='card-title'> National Institute of Neurological Disorders and Stroke </h3> <div class='card-text'> <p>Read about the work that the National Institute of Neurological Disorders and Stroke (NINDS) is doing with the NIH HEAL Initiative. </p> </div> <a class="btn btn-primary gtm-card-button bottom-button mt-2" href=https://www.ninds.nih.gov/Current-Research/Trans-Agency-Activities/NINDS-Role-HEAL-Initiative> Read More </a> </div> </div> </div> <div class='col-lg-4 col-md-6 col-sm-12'> <div class='border-none card'> <div class='card-img-top'> <div> <div class="visually-hidden field-label">Image</div> <img loading="lazy" src="/files/%2820-1021%29%20NIH%20HEAL%20NIDDK%20logo%20card_DEV2.jpg" width="900" height="454" alt="NIDDK logo" class="img-fluid" /> </div> </div> <div class='card-body'> <h3 class='card-title'> National Institute of Diabetes and Digestive and Kidney Diseases </h3> <div class='card-text'> <p>Read more about how the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is working with the NIH HEAL Initiative with the Hemodialysis Opioid Prescription Effort (<strong>HOPE</strong>) Consortium </p> </div> <a class="btn btn-primary gtm-card-button bottom-button mt-2" href=https://www.niddk.nih.gov/research-funding/research-programs/hemodialysis-opioid-prescription-effort-consortium> Read More </a> </div> </div> </div> <div class='col-lg-4 col-md-6 col-sm-12'> <div class='border-none card'> <div class='card-img-top'> <div> <div class="visually-hidden field-label">Image</div> <img loading="lazy" src="/files/20-0812%20HEAL%20Patient%20Engagement%20Meeting%20Materials_Social%20Cards_Option1.jpg" width="1260" height="630" alt="Banner announcing workshop" class="img-fluid" /> </div> </div> <div class='card-body'> <h3 class='card-title'> Virtual Seminar: Engaging Patients in the Research Process </h3> <div class='card-text'> <p>Learn more about how the virtual seminar on Engaging Patients in the Research Process</p> </div> <a class="btn btn-primary gtm-card-button bottom-button mt-2" href=/events/2020-08/patient-engagement-workshop> Learn More </a> </div> </div> </div> </div> </div> </div> </div> </div> </div> </div> </main> <div class="container"> <p class="last-updated">Published: August 19, 2020</p> </div> </div> </div> <footer class="fluid-container p-3 footer" role="contentinfo"> <div class="container"> <div class="row"> <div class="col-12 col-md-3"> <div class="footer-logo"><a href="/"><img alt="NIH HEAL Initiative" src="/assets/HEAL_Initaitive_White.svg" /></a></div> <h2>Contact Us</h2> <p>Please send email to <a href="/cdn-cgi/l/email-protection#c58d808489b4b0a0b6b1acaaab85aaa1ebabacadeba2aab3"><span class="__cf_email__" data-cfemail="743c31353805011107001d1b1a341b105a1a1d1c5a131b02">[email protected]</span></a></p> </div> <div class="col-6 col-md-3"> <h2><a class="gtm-footer-link" href="/about">About</a></h2> <ul class="list-unstyled"> <li><a class="gtm-footer-link" href="/about/research-plan">Research Plan</a></li> <li><a class="gtm-footer-link" href="/about/nih-heal-initiative-leadership">Leadership</a></li> </ul> <h2><a class="gtm-footer-link" href="/funding">Funding</a></h2> <ul class="list-unstyled"> <li><a class="gtm-footer-link" href="/funding/awarded">Funded Projects</a></li> <li><a class="gtm-footer-link" href="/funding/open">Open Opportunities</a></li> <li><a class="gtm-footer-link" href="/funding/closed">Closed Opportunities</a></li> </ul> <h2><a class="gtm-footer-link" href="/data">Data</a></h2> <h2><a class="gtm-footer-link" href="/news">News</a></h2> <h2><a class="gtm-footer-link" href="/resources">Resources</a></h2> </div> <div class="col-6 col-md-3"> <h2><a class="gtm-footer-link" href="/research">Research</a></h2> <ul class="list-unstyled research-list"> <li><a class="gtm-footer-link" href="/research/research-to-practice">Translation of Research to Practice for the Treatment of Opioid Addiction</a></li> <li><a class="gtm-footer-link" href="/research/new-strategies">New Strategies to Prevent and Treat Opioid Addiction</a></li> <li><a class="gtm-footer-link" href="/research/infants-and-children">Enhanced Outcomes for Infants and Children Exposed to Opioids</a></li> <li><a class="gtm-footer-link" href="/research/medication-options">Novel Therapeutic Options for Opioid Use Disorder and Overdose</a></li> <li><a class="gtm-footer-link" href="/research/clinical-research">Clinical Research in Pain Management</a></li> <li><a class="gtm-footer-link" href="/research/preclinical-translational">Preclinical and Translational Research in Pain Management</a></li> <li><a href="/research/cross-cutting-research">Cross-Cutting Research</a></li> <li><a href="/research/training-next-generation-researchers">Training the Next Generation of Researchers in HEAL</a></li> </ul> </div> <div class="col-12 col-md-3"> <h2>Stay Connected</h2> <p><a href="https://public.govdelivery.com/accounts/USNIHNIDA/signup/43013" target="_blank" class="signup">Sign up for news and updates.</a></p> <div class="footer-social-media"> <h2>Follow NIH</h2> <a aria-label="Follow us on X" class="gtm-social-twitter" href="https://twitter.com/nih" target="_blank"> <span aria-label="Twitter Icon" class="x-icon"> </span> </a> <a aria-label="Follow us on Instagram" class="gtm-social-instagram" href="https://www.instagram.com/nihgov" target="_blank"> <span aria-label="Instagram Icon" class="ig-icon"> </span> </a> <a aria-label="Follow us on Facebook" class="gtm-social-facebook" href="https://www.facebook.com/nih.gov/" target="_blank"> <span aria-label="Facebook Icon" class="fb-icon"> </span> </a> <a aria-label="Visit the HEAL YouTube" class="gtm-social-youtube" href="https://www.youtube.com/playlist?list=PLd_5BzGlfpgpkK12ToGD9VtxF8ClhEusZ" target="_blank"> <span aria-label="YouTube Icon" class="yt-icon"> </span> </a> </div> </div> <hr class="col-12" /> <div class="col-md-12 gov-links"> <ul class="list-inline"> <li class="list-inline-item"><a class="gtm-footer-link" href="https://www.nih.gov/">NIH Home</a></li> <li class="list-inline-item"><a class="gtm-footer-link" href="https://salud.nih.gov/">En Español</a></li> <li class="list-inline-item"><a class="gtm-footer-link" href="https://www.nih.gov/web-policies-notices">Web Policies and Notices</a></li> <li class="list-inline-item"><a class="gtm-footer-link" href="https://www.hhs.gov/vulnerability-disclosure-policy/index.html">HHS Vulnerability Disclosure</a></li> <li class="list-inline-item"><a class="gtm-footer-link" href="https://www.nih.gov/institutes-nih/nih-office-director/office-communications-public-liaison/freedom-information-act-office">Freedom of Information Act</a></li> <li class="list-inline-item"><a class="gtm-footer-link" href="https://www.edi.nih.gov/no-fear-act">No Fear Act</a></li> <li class="list-inline-item"><a class="gtm-footer-link" href="https://oig.hhs.gov/">Office of Inspector General</a></li> </ul> <p><a class="gtm-footer-link" href="https://www.hhs.gov/">U.S. Department of Health and Human Services</a></p> </div> <div class="col-md-9 mx-auto gov-links"> <p>Helping to End Addiction Long-term<sup>®</sup> and NIH HEAL Initiative<sup>®</sup> are registered service marks of the Department of Health and Human Services.</p> </div> </div> </footer> <script data-cfasync="false" src="/cdn-cgi/scripts/5c5dd728/cloudflare-static/email-decode.min.js"></script><script type="application/json" data-drupal-selector="drupal-settings-json">{"path":{"baseUrl":"\/","pathPrefix":"","currentPath":"node\/36461","currentPathIsAdmin":false,"isFront":false,"currentLanguage":"en"},"pluralDelimiter":"\u0003","suppressDeprecationErrors":true,"data":{"extlink":{"extTarget":true,"extTargetAppendNewWindowLabel":"(opens in a new window)","extTargetNoOverride":false,"extNofollow":false,"extTitleNoOverride":false,"extNoreferrer":false,"extFollowNoOverride":false,"extClass":"ext","extLabel":"(link is external)","extImgClass":false,"extSubdomains":true,"extExclude":"(\\.gov.*?)","extInclude":"","extCssExclude":".footer-social-media, .social-share-button, .twitter-share-button","extCssInclude":"","extCssExplicit":"","extAlert":false,"extAlertText":"This link will take you to an external web site. We are not responsible for their content.","extHideIcons":false,"mailtoClass":"0","telClass":"","mailtoLabel":"(link sends email)","telLabel":"(link is a phone number)","extUseFontAwesome":false,"extIconPlacement":"append","extPreventOrphan":false,"extFaLinkClasses":"fa fa-external-link","extFaMailtoClasses":"fa fa-envelope-o","extAdditionalLinkClasses":"","extAdditionalMailtoClasses":"","extAdditionalTelClasses":"","extFaTelClasses":"fa fa-phone","whitelistedDomains":null,"extExcludeNoreferrer":""}},"user":{"uid":0,"permissionsHash":"af5eece730f2d5aa6b0d43e1d564e85bd63161885787ef00214b14f2707a18ff"}}</script> <script src="/files/js/js_7TYmswt-MVGfgX21wEODlw-O8sSJTfkxx8uFPwFO1ws.js?scope=footer&delta=0&language=en&theme=particle&include=eJxLTEkpyU_Mq9RPhDL00ory80p0UitKcjLzsvVTikoLEnP0oFydgsSikszknFT95PyiVASvuCAfKJ-eUQIA2uQfIw"></script> <script src="https://static.addtoany.com/menu/page.js" defer></script> <script src="/files/js/js_3AgteIobkZLnQhk0CGfG1ellxZX-g1R55GVdRsRk2Kc.js?scope=footer&delta=2&language=en&theme=particle&include=eJxLTEkpyU_Mq9RPhDL00ory80p0UitKcjLzsvVTikoLEnP0oFydgsSikszknFT95PyiVASvuCAfKJ-eUQIA2uQfIw"></script> </body> </html>