A Call to Action: Advancing Heart Failure Research Through Nursing Advocacy: Bridging Patients and Clinical Trials

Juvel-lou P. Velasco, PhDc, MSN, RN, APRN-ANP, AGACNP-BC, CCRN, CHFN
PhD Candidate, The University of Arizona
Founder and Nurse Practitioner, Small Valley Healthcare Partners
Tucson, AZ

As of August 20, 2025, 7,203 active heart failure (HF) studies were registered on ClinicalTrials.gov 1 . Of these, 412 were funded by the National Institute of Health (NIH), 2,214 by Industry, 133 by federal agencies, and 5,595 by independent sponsors such as universities,
non-profit organizations or individual investigators. These figures represent only the studies formally registered within the database and do not capture the full scope of investigator-initiated or independent research projects. The true research footprint in HF is likely even larger. 

Yet, despite this robust landscape of ongoing research, public awareness and participation in trials remain strikingly low. A landmark survey by Harris Interactive 2 found that 85% of patients were either unaware or unsure that clinical trial participation was even an option following diagnosis. For patients living in rural or hard-to-reach areas - where geographic, technological, and socioeconomic barriers limit healthcare access - this gap is widened even further. This result is not merely a missed opportunity to advance science, but also a lost chance for patients to access innovative therapies that could improve or even extend their life.

Nurses as Catalysts for Access and Participation
Research drives progress in HF, but trials cannot succeed without inclusive patient enrollment. Nurses - who often serve as the most consistent, trustworthy, and accessible point of contact - are uniquely positioned to bridge the gap between opportunities and patients, regardless of geography. Their clinical knowledge, communication skills, and advocacy mindset make them powerful agents of equity, ensuring that research participation is not limited to those living near urban academic centers.

The NIH emphasizes the critical role of healthcare providers, including nurses, in raising awareness and facilitating access to research are critical in raising awareness about research participation 3 . Yet comparatively little literature highlights the distinct advocacy role nurses play in increasing equitable trial participation. Nurses can increase awareness, access, and representation by taking an active role in extending research opportunities to underserved patients – including those in remote, rural, and resource-limited areas. This work can be organized into five core strategies: Educate, Engage, Empower, Equity, and Endorse.

1. Educate
• Explain the purpose, process, and potential benefits and risks of clinical trials in clear, culturally sensitive, and literacy-appropriate language.
• Address misconceptions, such as the false belief that participation is unsafe, by highlighting built-in safeguards and oversight structures.
• Actively listen to patient concerns, identifying practical barriers such as transportation, scheduling, or financial strain, and helping explore solutions.
• Use telehealth visits, phone calls, nurse service lines, and community health partnerships to extend education into homes and local clinics where patients already seek care.
• Distribute information in multiple formats – print, digital, and spoken dialogue - to improve accessibility for patients with limited digital literacy.

2. Engage
Engagement begins with trusted clinical interactions. According to the National Institutes of Health 3, more than three-quarters of clinical trial participants first heard about the opportunity from their healthcare provider. Nurses are ideally placed to identify and connect patients with opportunities, especially those outside of metropolitan hospital systems. Nurses can:
• Actively seek out research opportunities relevant to their patient population.
• Integrate conversations about research into routine clinical care, normalizing participation as part of the continuum of care options.
• Serve as a bridge across system, by helping patients in underserved regions connect with research coordinators, simplifying referral logistics and bridging long distance with technology.

3. Empower
For participation to be ethical, it must be based on choice, autonomy, and access 4. The National Institutes of Health 3 notes that one in ten Americans would consider joining in a trial if simply asked and provided support. Nurses can:
• Present trials as options, not directive – recognizing that willingness to travel long distances varies by individual.
• Provide balanced resources including options for studies with flexible visit schedules, local laboratory partnerships, or remote monitoring technologies like wearables.
• Validate patients’ concerns, affirming that declining is always acceptable, while also emphasizing that geographic barriers do not automatically exclude them from participation.

4. Equitable/Equity
Scientific findings must reflect the real-world populations affected by heart failure, including geographically isolated groups. The U.S. Food and Drug Administration 5 continues to recommend targeted measures to increase inclusion of underrepresented participants. Nurses can:
• Advocate within their health systems to create infrastructure for satellite research participation sites in rural hospitals, clinics, and community health centers.
• Raise awareness of systemic inequities ties to geography, ensuring they are factored into institutional recruitment strategies.
• Collaborate with outreach teams, rural nurse navigators, and community leaders to bring research information into local churches, libraries, and senior centers – trusted gathering points in remote areas.

5. Endorse
Expanding access requires nurses to stay connected and informed well beyond local networks. Sustained advocacy means:
• Regularly checking ClinicalTrials.gov and professional organizations for opportunities relevant to rural and underrepresented patients.
• Partnering with academic centers, research institutions, and professional organizations such as the Heart Failure Society of America (HFSA) and American Association of Heart Failure Nurses (AAHFN) to design a decentralized and hybrid trial models that reach patients where they are.
• Building cross-sector collaborations with rural health associations, telehealth networks, and local organizations expand footprint of research opportunities.
• Using digital outreach tools responsibly – social media, patient portals, email newsletters – to disseminate information broadly, counter misinformation, and normalize research participation even in areas far from dedicated research hubs.

Despite thousands of active HF studies worldwide, many patients – especially those in remote and underserved communities – remain unaware of, or unable to access, opportunities to participate. Nurses are uniquely poised to close this gap. By educating, engaging, empowering, promoting equity, and endorsing research across geographic and systemic boundaries, nurses can transform awareness into access and access into participation.

By serving as connectors between patients and trials, whether through a rural clinic, a telehealth screen, or community health worker, nurses are not only improving access – they are democratizing discovery. This expansion of the nurses’ role is essential if clinical research is to deliver on its promise of equitable, life-saving progress for all patients with HF, regardless of where they live.

References:
1. National Library of Medicine. Search results for "heart failure" ClinicalTrails.gov. Accessed August 20, 2025, 2025. https://clinicaltrials.gov/search?cond=heart%20failure
2. Harris Interactive. Misconceptions and lack of awareness greatly reduce recruitment for cancer clinical trials. Health Care New.
3. National Institutes of Health. The need for awareness of clinical research. Accessed August 20, 2025, 2025. https://www.nih.gov/health-information/nih-clinical-research-trials-you/need-awareness-clinical-research
4. Avins AL, Goldberg H. Creating a culture of research. Contemp Clin Trials. Jul 2007;28(4):557-62. doi:10.1016/j.cct.2007.02.004
5. U.S. Food and Drug Administration. Clinical trials guidance documents. Updated 2024. Accessed August 20, 2025, 2025. https://www.fda.gov/science-research/clinical-trials-and-human-subject-protection/clinical-trials-guidance-documents