Why Patient Inclusion in Medical Decision Making Matters

No medical decision regarding patients should be made without their inclusion. This is becoming a global norm, with patients being included in medical conferences and research projects.

According to the 2016 issue of the British Medical Journal (BMJ), the call for patient inclusion in medical conferences was first raised by disability rights advocates, who emphasized that no strategy should be formulated without involving all stakeholders.

Recently, patient organizations have strongly advocated for greater involvement of patients in healthcare matters. In the United States, under the Patient Protection and Affordable Care Act, patients are included in research efforts for their benefit.

The 8th International AIDS Conference in 1992 was the first conference in which patients participated, though progress in this area has been relatively slow. It is essential to make patients active partners in research.

Since 2002, rheumatology conferences such as OMERACT have consistently included patients, with 10% of attendees being patients. The inclusion of patients in research has yielded positive outcomes for their well-being.

In 2011, at the Medicine 2.0 Conference, over 35 patients participated through a scholarship program at Stanford University. The Stanford X Conference demonstrated that patient involvement strengthens their voice. The European Patient Forum has issued a charter empowering patients. The growing use of social media has facilitated discussions and the sharing of information among people, further promoting patient involvement in medical science.

The British Medical Journal has celebrated a decade of patient inclusion efforts and urges others to follow suit. Patients now play a significant role in decision making, participating in research, and accessing medical facilities. Funding agencies are increasingly investing in patient-inclusive initiatives, encouraging public participation.

Several institutions, such as the Patient Centered Outcomes Research Institute in the U.S., the Canadian Institutes of Health Research, and the National Institute for Health and Care Research, focus on patient-centered research.

Lucien Engelen, a patient advocate, introduced the Patient Charter, which aligns with the World Health Organization‘s goal of including patients and the public globally. Organizations like the Patient Revolution, the International Shared Decision Making Society, and CareLab advocate for making healthcare less commercialized and more compassionate. The British Medical Journal Group includes patients and the public in their editorial processes and offers advisory panels to address health-related issues collaboratively.

Key focus areas today include access to health records, involvement in genetic science, participation in health conferences, and ensuring patient safety. The goal is to bridge the gap between expectations and reality, striving to establish a democratic healthcare system that meets people’s needs. The global movement towards patient inclusion in research, conferences, and treatment continues to grow.

The first step in this partnership is to publish articles written by patients, whether independently or collaboratively, sharing their personal experiences in medical journals.

In 2023, 40% of educational content in the British Medical Journal involved patient contributions.

A monthly column titled “What Your Patient Thinks” provides insights from patients.

More than half of the BMJ Group’s journals welcome content written by patients. Involving patients, caregivers, and support staff in healthcare can lead to significant improvements in healthcare services.

Patients are also reviewing research papers, a practice now encouraged by BMJ. This highlights the importance of patient inclusion in medical affairs. In our country, the need for patient involvement is even greater. Including patients in this process will benefit them immensely.

Globally, lawsuits against physicians continue, often due to a lack of communication and failure to involve patients and their families in decision making. Inadequate communication about treatment plans and expected outcomes contributes to legal disputes.

Today, healthcare institutions aim to keep patients informed and involved, enhancing trust and reducing conflicts. Studies show that healthcare providers who empathize with patients and effectively communicate with them face fewer legal challenges.

Physicians with strong interpersonal skills and psychological understanding have lower litigation rates. On the other hand, physicians who fail to engage with patients or explain their conditions thoroughly often leave patients dissatisfied.

Building trust and communication between patients and doctors enhances hospital environments. In our hospitals, patient counseling and communication are often undervalued.

Overcrowding in public hospitals is one reason, but the primary issue is the lack of awareness and prioritization of patient communication. Even private hospitals that charge high fees often fail to engage with patients directly, which needs to change.

Patient inclusion in medical decision making and research is crucial. The world is actively moving in this direction, having started this journey long ago. It is time for us to begin considering this as well. Our medical journals should include patient contributions, and conferences should invite patients to participate—free of charge.