Challenges of Integrating Patient Voice into Clinical Research in Turkey

In Turkey, clinical research must be approved by the Turkish Medicines and Medical Devices Agency (TITCK) and reviewed by ethics committees. These processes are closely monitored in compliance with national regulations and international ethical guidelines, such as the Helsinki Declaration. During clinical trials, ensuring ethical standards in patient selection and encouraging active patient participation are critical. Establishing a balanced relationship between researchers and patients—acknowledging patients as more than mere "subjects" but as informed participants—is essential to maintaining ethical integrity.

The concept of "patient voice" refers to incorporating patients' experiences, expectations, and needs into all stages of clinical research. This approach strengthens participant rights by allowing patients to contribute feedback and play an active role in shaping research processes. Integrating the patient voice into research is indispensable for balancing power dynamics and fostering a more ethical research environment. In Turkey, it is possible to mention that there are a number of obstacles that both doctors and patients face in progressing within a mutual-cooperative relationship in clinical research and treatment processes.

Current Challenges in Turkey

1. High Workload of Doctors
   In Turkey, some specialists are required to see up to 50 patients a day. This overwhelming workload, exacerbated by patients bypassing primary healthcare centers to directly access specialized hospitals, results in consultation times as short as three minutes. Such conditions hinder doctors from adequately explaining treatments or obtaining truly informed consent. As a result, patients may be directed to clinical trials without fully understanding the implications, often passively agreeing to decisions without asking questions.

   
   

2. Public Perception
   Another obstacle to patient participation in clinical research or adherence to prescribed treatments is the perception of healthcare system and clinical research in society. Patients may feel like "guinea pigs" when asked to participate in trials or when their doctors alter treatment strategies if initial approaches fail. Insufficient consultation times further prevent patients from fully understanding the potential benefits and risks of research, eroding trust and creating a sense of hierarchy where patients feel subordinate to healthcare providers.

   
   

3. Cultural Factors
   In high power-distance cultures like Turkey (Hofstede, 1980), the hierarchical nature of relationships can pose ethical challenges to involving patients in treatment and research processes. In such cultures, respect for authority often discourages patients from asking questions or seeking explanations, especially from highly qualified professionals. This dynamic may compromise the quality of consultations and limit patients’ active participation in their care.

   
   

4. Performance Evaluation Systems
   The Turkish Ministry of Health recently introduced a performance system allowing patients to rate doctors. While this initiative aims to improve service quality, the Turkish Medical Association has criticized it as an unscientific measure that unfairly shifts systemic issues onto doctors (TTB, 2024). This rating system fosters an environment where neither doctors can provide the quality of care they aspire to nor patients receive the quality of service they expect. Such circumstances make obtaining informed consent and building trust between doctors and patients increasingly difficult.

   
   

5. Violence Against Healthcare Professionals
   Violence against healthcare workers has created a power imbalance that disadvantages doctors. A minority  of patients may feel entitled to dictate treatment decisions, believing there will be consequences for doctors if their demands are unmet. A recent study on violence against healthcare workers in Turkey found that society generally disapproves of such violence, believes it is preventable, and does not see it as a legitimate way to address grievances (Filiz, Ünal, Kahveci & Uyar, 2022). However, the misuse of patient voice for non-scientific purposes has prioritized accessibility over quality in healthcare. Research highlights the importance of addressing systemic shortcomings rather than perpetuating a system where patient complaints serve as a tool to maintain existing flaws.

References:

Filiz, E., Ünal, S.N., Kahveci, Ş. & Uyar, S.(2022). Society's attitude towards violence against healthcare workers. Journal of Health Academicians, 9(4), 328-335.

Hofstede, G. (1980). Culture and organizations. International studies of management & organization, 10(4), 15-41.

Türk Tabipleri Birliği. (n.d.). TTB, e-nabız sisteminde hekimlerin puanlanması uygulamasının kaldırılmasını istedi. Accessed: November 26, 2024. https://www.ttb.org.tr/haber_goster.php?Guid=39b11aca-1bb7-11e8-b5f7-37c22a8c3d90