I remember the moment clearly. I had gone to a polyclinic in my neighbourhood for a check-up after feeling unwell for a few hours. I expected the usual; a few questions, maybe a prescription, and then I would be on my way.

When I returned to the doctor’s office for my test results, he told me that all the tests, including the HIV test, had come back negative. I was puzzled, then annoyed.

I hadn’t asked for an HIV test. No one had informed me they were doing it or explained why it was necessary.

Frustrated, I took to Twitter, and thankfully, the Ministry of Health confirmed that it was unethical and a clear violation of my rights.

That is also the day I realised how little I knew about my rights as a patient. And I wasn’t alone. Hundreds of people walk into hospitals every day, trusting the system, unaware that they have a say in the care they receive.

In 2013, the government, in collaboration with health sector partners, established the medical professional liability insurance law. This law outlines the rights of medical service users and the responsibilities of healthcare providers.

Yet, thousands of people visit healthcare facilities every day without knowing they have the right to be informed about their treatment, to consent (or not), to privacy and confidentiality, and to hold healthcare providers accountable when things go wrong.

And so, when something does go wrong, whether during or after treatment, many suffer in silence, unaware that they can speak up.

But who is responsible for upholding patients’ rights?

Ensuring these rights are respected is a shared responsibility.

Healthcare providers, government institutions, civil society organisations, and patients themselves all have a crucial role to play.

The Ministry of Health and regulatory bodies must ensure that patient rights are not just theoretical but enforced. There should be strong mechanisms to hold healthcare providers accountable.

Healthcare facilities should make patient rights education a core part of their services, ensuring that everyone walking into their facility understands what to expect. Those who violate patient rights must be held accountable.

On their part, healthcare providers must obtain informed consent before any test or procedure.

Confidentiality is also key. No one should have access to a patient’s medical information without their permission. And when violations occur, there must be clear channels for patients to report and receive redress.

Civil society organisations play a crucial role in bridging the awareness gap between healthcare users and providers.

The limited awareness of patient rights among both groups highlights the need for sustained public education, ensuring that citizens can demand their rights while healthcare providers uphold them.

That’s why at HDI, we are partnering with the Norwegian People’s Aid, to train healthcare providers on patient rights, equipping them with the knowledge and tools to offer rights-based care.

So far, we have conducted multiple training sessions in Masaka, Muhima, Kibagabaga, and Nyarugenge hospitals, emphasising ethical patient engagement.

In addition, we continue to collect data on patient satisfaction across Kigali, Musanze, Karongi, Gisagara, Nyamasheke, and Rusizi districts, among others.

On this quest for information, we continue to find out that a significant number of respondents have no knowledge of their rights as patients, including the right to choose their healthcare provider or access to their medical file.

Others are unaware that they have the right to be treated with dignity and respect, regardless of their condition or background.

Our data will continue to inform targeted efforts to strengthen medical service users’ awareness of their legal rights and equip them to advocate for their enforcement, ultimately fostering higher-quality healthcare service delivery.

Patient rights are not just legal protections, they are essential for building trust between healthcare providers and patients.

Without this information, many patients accept substandard care or even experience rights violations without realising they can challenge them.

However, when patients are informed about their rights, they can make better decisions about their health, ensuring better health outcomes.

That said, we, as patients, must also play our role. We must actively seek information, ask questions about our treatment and demand clarifications.

If something doesn’t feel right, we must speak up. When violations occur, we must report them instead of suffering in silence.

If we, patients, healthcare providers, policymakers, and advocates, each play our part, we can build a system that truly serves the people it was designed to help.

Nasra Bishumba is the Senior Communication Advisor at Health Development Initiative.