Why should everyone join in medical research? (Clinical Trials)

When you take a medicine or get a shot, have you ever wondered how many tests this medicine goes through before it reaches your hands? In fact, before a new medicine comes to the market, many things are investigated, such as whether it is safe for people, whether it works for the disease, and what the side effects are. We call these medical research studies involving people `Clinical Trials`. This is like the final and most important test of a new medicine.

So what is the problem with this research?

Imagine that you create a new recipe and give it to ten people who like the same type of food to try. If all ten people say, "Oh, this is great," will everyone like the dish? Maybe it's too spicy for someone who doesn't like spicy food. Maybe it's not sweet enough for someone who likes sweet food. Right?

There is a similar problem in medical research. Many clinical trials around the world only involve a limited group of people from the same ethnic group and social class. For example, in research conducted in the United States, very few black people participate. The same goes for people of Asian descent.

This is a very important issue for a country like ours, which has different ethnicities, religions, and cultures. Because the way a person's body responds to a medicine may be slightly different from that of someone from another ethnic group.

Why is it so important for diverse populations to participate in research?

Simply put, the more diverse a study is, the more generalizable its results will be. That means we can be more confident that the drug will be safe and effective for everyone who uses it tomorrow.

The way a drug works, the side effects it causes, and the nature of those side effects can vary from person to person. This is due to many factors, including our genes, lifestyle, eating habits, and the environment we live in.

Why are people reluctant to participate in research?

There are several reasons for this. If we understand these, it will be easier for us to find solutions to this problem.

Issues of Trust

There have been some serious mistakes in medical research throughout history. An example is the Tuskegee Syphilis Study in America. In this, 600 black men were subjected to research for 40 years, without being told about their disease or the treatment available. And there is the story of a woman named Henrietta Lacks. Her cancer cells were taken without her consent and used for research around the world.

These kinds of incidents have created suspicion and distrust of medical research among some sections of the population. But the most important thing is that because of these mistakes, very strict rules and ethical systems have been created all over the world to protect anyone who participates in research. Nowadays, nothing can be done without someone's permission.

Lack of Information and Access

Most of the time, such research is conducted in major hospitals in big cities like Colombo. People living in rural areas do not get information about these. Even if they do get information, it is not easy to come to Colombo to participate in it. Also, people do not know if they are qualified to participate in such research. Sometimes, doctors also do not inform patients about this.

Practical Difficulties

Participating in research means dedicating both time and money.

• Not being able to go to work: For a daily wage earner, not going to work for a day is a big loss.
• Travel expenses: Not everyone can afford to pay for bus fare from a distant village.
• Other diseases: Some studies exclude people with other diseases, such as diabetes and high blood pressure. Because these diseases are more common among certain groups of people, they are naturally excluded from this opportunity.

Feeling that research does not benefit them

Some people think, "Even though we helped with this, the good results from this won't come to us. We're still sick and suffering." This is also an important reason why people shy away from research.

So what can be done to change this situation?

It's not that there are no solutions to this problem. It requires the collaboration of both researchers and the public.

1. Reaching out to the public: You need to go to places where people are not limited to hospitals and clinics to talk about research. You need to talk about this through people who people trust. For example, you can raise awareness through people like the temple priest, the church priest, the temple priest, and a village community leader.

2. Providing facilities: It would be a great help if research participants were provided with financial support for their travel expenses, food, etc. Perhaps this could be facilitated for those who do not have someone to take care of their children.

3. Building trust: Those in research teams need to build a good relationship with the participants. They need to listen to their questions and be patient in clearing their doubts. Also, if officers representing different communities are recruited for research teams, people will feel like they are talking to one of their own, which will increase trust.

Ultimately, research is essential for medical science to advance. If the benefits of that research are to be equally shared, it requires the contribution of all of us.