What are the most effective ways to address patient distrust of healthcare research?

Patient distrust of healthcare research is a serious challenge that can undermine the quality and effectiveness of healthcare delivery and outcomes. Many patients are skeptical of the motives, methods, and findings of healthcare researchers, and may refuse to participate in clinical trials, consent to data sharing, or follow evidence-based guidelines. This article explores some of the most effective ways to address patient distrust of healthcare research and foster a culture of trust and collaboration.

1 Understand the root causes of distrust

In order to address patient distrust of healthcare research, it is essential to understand the root causes of their skepticism and reluctance. Common factors that contribute to this include a lack of transparency and communication from researchers regarding the purpose, process, and results of their studies; a history of unethical or harmful research practices that exploited or harmed vulnerable populations; mistrust of the healthcare system due to perceived or experienced discrimination, bias, or injustice; conflicting or confusing information from different sources, media, or experts; and personal beliefs, values, or preferences that clash with scientific evidence or recommendations. By recognizing these factors, healthcare researchers can modify their approach to meet the particular concerns and needs of their target patients.

Add your perspective

Dra. Omidres Pérez de Carvelli

Presidente de la OITT. Coordinadora del Grupo de Salud Digital y Diabetes en ALAD | Liderazgo en proyectos innovadores y comunicaciones efectivas
Report contribution
Es importante que el paciente perciba el beneficio para el y para otros a corto, mediano y largo plazo de su aporte, y como su contribución puede ayudar a otros con su misma situación a estar mejor. Definitivamente el espíritu solidario entre pacientes es un aspecto poderoso a considerar.

Translated

Like
Khushbu Balsara, DDS, MPH

Postdoctoral Research Fellow | Global Health | JH-IIRU | Johns Hopkins Bloomberg School of Public Health
Report contribution
Being an oral surgeon and a public health professional, addressing patient distrust in healthcare research requires a multifaceted approach that begins with understanding the root causes of the skepticism. Historically, certain populations have been subjected to unethical research practices, leading to deep-seated mistrust. Having a clear, transparent conversation and ensuring diverse representation in research, including marginalized groups. This fosters a sense of ownership and trust in the research process.

Like
Lisandro Hernández-Cerró

Comunicación Sénior.
Report contribution
El aspecto de la confidencialidad tiene un par de aristas en la construcción del vínculo de confianza. Por un lado, existe el marco legal que contempla garantías de resguardo de la historia médica, con las posibilidades tecnológicas que actualmente se pierden en el horizonte, más allá de lo espacial y temporal. Por otro lado, esa legalidad varía en cada legislación, con una clara evolución hacia una compleja y necesaria homologación. Ambos aspectos son socio culturales. Ese constructo legal está asociado a la idiosincracia de cada población sanitaria (me refiero a cada país; y en algunos casos a locaciones específicas). La exégesis de esas virtudes tiene un componente asociado a las ciencias de la comunicación. Un complemento fundamental.

Translated

Like

2 Engage patients as partners

The second step to address patient distrust of healthcare research is to engage patients as partners in the design, conduct, and dissemination of their studies. This means involving them in setting research priorities and questions, developing research methods and protocols that are respectful and responsive to their preferences, recruiting and retaining research participants that are representative and diverse, collecting and analyzing accurate and reliable data, and sharing and translating clear and actionable findings. By engaging patients as partners, healthcare researchers can enhance the legitimacy, credibility, and relevance of their studies while also increasing the patient's sense of ownership, empowerment, and satisfaction.

Add your perspective

Dra. Omidres Pérez de Carvelli

Presidente de la OITT. Coordinadora del Grupo de Salud Digital y Diabetes en ALAD | Liderazgo en proyectos innovadores y comunicaciones efectivas
Report contribution
Esto solo es posible si hay pacientes con el nivel educativo adecuado para tal fin, lo cual no siempre es fácil. De no ser así, más que ser una ayuda, incluso puede ser un serio obstáculo en el desarrollo del proyecto.

Translated

Like

3 Educate patients about the benefits of research

The third step to address patient distrust of healthcare research is to educate patients about the benefits of participating in or supporting research. This can be done by providing them with accessible and understandable information about the research topic, process, and outcomes, as well as evidence-based and personalized feedback about how the research can improve their health and well-being. Additionally, patients should be given opportunities and incentives to learn from and interact with other patients, researchers, or experts. Lastly, recognition and appreciation for their contribution and impact on the research should be given. Through education, healthcare researchers can increase the patient's awareness, interest, and motivation to engage in or support research activities.

Add your perspective

Dra. Omidres Pérez de Carvelli

Presidente de la OITT. Coordinadora del Grupo de Salud Digital y Diabetes en ALAD | Liderazgo en proyectos innovadores y comunicaciones efectivas
Report contribution
Esto es INDISPENSABLE si queremos aumentar la adherencia de los participantes al protocolo, de otro modo, es poco probable lograrlo, e incluso sesgar el resultado obtenido según el objetivo del estudio.

Translated

Like

4 Build trust relationships with patients

The fourth step to address patient distrust of healthcare research is to build trust relationships with patients throughout the research cycle. This involves showing patients that they are valued and respected, that their rights, privacy, and autonomy are protected, that their feedback is heard and addressed, and that their expectations, goals, and outcomes are shared. By creating trusting relationships with patients, healthcare researchers can cultivate a culture of trust and collaboration that can improve the quality and impact of their research.

Add your perspective

5 Evaluate and improve the research practices

The fifth step to address patient distrust of healthcare research is to evaluate and improve the research practices based on the feedback and outcomes of the research. This means measuring and monitoring the patient's level of trust, satisfaction, and engagement in the research, as well as identifying and addressing any gaps, barriers, or challenges that affect it. Additionally, healthcare researchers should implement and test changes, innovations, and solutions that can improve the patient's trust, satisfaction, and engagement in the research. Finally, they should share and disseminate any lessons learned, best practices, or success stories that can inspire and inform other researchers and patients. By evaluating and improving their research practices, healthcare researchers can ensure they are continuously adapting their research to meet the changing needs of their patients.

Add your perspective

Khushbu Balsara, DDS, MPH

Postdoctoral Research Fellow | Global Health | JH-IIRU | Johns Hopkins Bloomberg School of Public Health
Report contribution
As a researcher and oral surgeon, I recognize patients distrust of healthcare and research. Transparency, open communication, and collaborative research design are crucial for building trust. A must is explaining the science, reviewing consent, and emphasizing voluntary participation set an ethical foundation. Involving patient advocates in shaping research priorities, recruitment, analysis, and dissemination gives them ownership. Post-study follow-ups to share results and express gratitude maintain trust. Acknowledging valid reasons for skepticism, involving patients as partners, improving outcomes they care about, and honoring their contributions with empathy and dignity serve patients best interests.

Like

6 Here’s what else to consider

This is a space to share examples, stories, or insights that don’t fit into any of the previous sections. What else would you like to add?

Add your perspective

Khushbu Balsara, DDS, MPH

Postdoctoral Research Fellow | Global Health | JH-IIRU | Johns Hopkins Bloomberg School of Public Health
Report contribution
What I have learnt by serving different population being an oral surgeon and researcher is to be culturally sensitive. Always be sensitive to cultural differences and preferences. What has worked brilliantly is tailoring my communication and research approach to the cultural backgrounds and beliefs of my patients and advocates.

Like

What are the most effective ways to address patient distrust of healthcare research?

1

2

3

4

5

6

1 Understand the root causes of distrust

2 Engage patients as partners

3 Educate patients about the benefits of research

4 Build trust relationships with patients

5 Evaluate and improve the research practices

6 Here’s what else to consider

Healthcare Management

Rate this article

Thanks for your feedback

More articles on Healthcare Management

More relevant reading

What are the most effective ways to address patient distrust of healthcare research?

1

2

3

4

5

6

1 Understand the root causes of distrust

2 Engage patients as partners

3 Educate patients about the benefits of research

4 Build trust relationships with patients

5 Evaluate and improve the research practices

6 Here’s what else to consider

Healthcare Management

Rate this article

Thanks for your feedback

Explore Other Skills