Data registries measuring infectious diseases in cancer

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Published: 24 Jul 2013
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Dr Mamadou Diop – Institut Curie, Paris, France

Dr Mamadou Diop talks to ecancer at the 2013 National Cancer Institute Directors Meeting (NCID 2013) in Lyon about the logistical and political complications of creating data registries in order to understand the trends in cancer incidence from infectious diseases.

 

Filming supported by the International Prevention Research Institute

 

 

Yes, infectious diseases play a big role in cancer incidence and it’s why incidence in different localisations are completely different from high income countries. It’s why we have liver cancer with a high incidence and cervical cancer too. That’s the main problem and we are facing tumour registry data, to have data, real data, of cancer, different localisations, because it’s very important to have the right interventions like vaccinations and screening.

How do you get your estimates, the ones you have already?

It’s just estimations, comparison from other countries that have a tumour registry with the same sociodemographic aspects. It’s not real, the number we have is not real. We have to have a system tumour registry.

What are you having to do to get a proper tumour registry, then? What are the nuts and bolts that have to be put in process?

We need a political willing because we need to have lines in the budget of the government and we need organisations, appointment of registrars to start registration of cases. It’s very, very important to have good software that doesn’t need computers, doesn’t need many human resources to start registration.

It’s one thing saying what is needed but there is a technique, a magic factor in getting what you need. How do you advise doctors, perhaps in other countries, to generate the will to get the right sorts of data and then the right sort of cancer treatment?

Now we are working in software that will be available and easy to use and with an online registration with different levels of access. We can get information from patients with security, with quality control. I think it will be easier to manage than what is used right now in high income countries, like software engineering. I think we will start very, very soon to use this software to register patients online.

Chemotherapy is another issue, isn’t it? You can’t necessarily have the drugs you’d like to use.

Yes, chemotherapy drugs and the high cost of chemotherapy drugs and inaccessibility of chemotherapy drugs are big issues in our countries.

What are you doing about it?

What we are doing now, it’s to advocate to the government to subsidise chemotherapy drugs. It’s necessary because we don’t make these drugs, we import these drugs and we need to. Patients, they are totally charged to patients. Less than 20% of the population have health insurance or can access it.

So political will is quite important then?

Yes, very, very, very important.

And in cervical cancer, which I know is another issue, what are you doing about political will there?

Yes, it’s the first, it’s the most common cancer in our country. We have to combine vaccinations and a screening programme. For the screening programme we cannot use Pap smear like in developed countries because Pap smear needs many human resources, equipment and;

But you can now use the acetic acid test, can’t you?

Yes, we just have to use easy methods like visual inspection which is less sensitive but combined with vaccinations. But the vaccines are very expensive too. We need to apply for Gavi programme, for example, and to combine the two methods, vaccination for the girls and screening for women, for mothers.

So, how would you sum up the needs of Senegal and also, by comparison, other countries in a similar situation? What’s your take home message for doctors and organisers of cancer medicine?

I think it’s necessary to put everybody together, social civil society, government and health providers. I think it’s very, very important to change the culture, the oncology culture. We need to face many kinds of problems: primary prevention, screening, management and tumour registry, that’s very, very important to be able to evaluate what we are going to put into place and to see if it’s increasing or decreasing.