• Collecting this data in a country can be achieved through routine health facility data collection which fundamentally form the national annual report.
• It is time we realise and embrace the fact that information is power.
The organ donation and transplantation activity data recorded by the Spanish National Transplant Organization in 2018, revealed that there were 2,241 donors and 5,318 solid organ transplants conducted in the country. A total of 3,310 kidneys, 312 hearts, 369 lungs, 1,230 livers, six intestines and 82 pancreas transplants we conducted. (SNTO website)
In the United States, someone needs blood transfusion every two seconds, nearly 36,000 units of red blood cells are needed daily and approximately 21 million blood components are transfused each year. The number of sickle cell disease patients is 90,000 to 100,000, and about 1,000 babies are born with the disease annually and require frequent blood transfusion. (American Red Cross)
In the United Kingdom 6,293 people are on a transplant waiting list, since April 2019, 1,688 people have received an organ transplant and recent data shows that as at September 13, 2019, the number of deceased donors was 668 whilst living donors are 379. Similarly, deceased donor transplants amount to 1,619 and total living donor transplants amount to 379. (NHS Blood and Transplant)
Spain, UK and the US, among other countries that keep a record of health data and avail the same to the public, have strong health systems that are able to provide organ donation and transplantation services to their citizens. With these kinds of data, these countries can confidently comment on the shortage of organs and blood in their countries based on the current need against availability as captured in their records.
They have learnt to appreciate that it is only by keeping a record of sound and reliable health data that they are able to create essential health system policies, implement them, advance in health research, offer their citizens quality health services and most especially plan around health financing.
Data collection is the ongoing orderly process of collecting, evaluating and interpreting innumerable types of information from numerous sources. According to the World Health Organization (WHO), data collection in health is necessary for designing, implementing and evaluating public health prevention programmes. Further, WHO indicates that timely, sufficient and dependable health and health-related data records are essential for evaluating the state of a population’s health and how it changes.
Spain, UK and the US, among other countries that keep a record of health data and avail the same to the public, have strong health systems that are able to provide organ donation and transplantation services to their citizens.
This position was affirmed during Measurement for Accountability for Results in Health Summit that took place in Washington DC, USA, from June 9-11, 2015. The summit goal was to enforce the idea that health data is vital in setting priorities, adjusting strategies, formulating laws and policies and measuring results.
Collecting this data in a country can be achieved through routine health facility data collection which fundamentally form the national annual report. By individual health facilities collecting data daily and presenting this data to a larger pool, trends start forming and it becomes possible to assess geographical differences for a range of standard health indicators, in this case, organ donation and transplantation services.
But where is this information in Kenya? For instance, we already know that about four million people are suffering from some form of kidney condition (Kenya Renal Association), what we do not know is, how many among them are receiving dialysis services, how many of them have since received a kidney transplant performed in the country, how many living kidney donors have there been?
Does it mean that our hospitals do not have information systems for data collection and reporting? Such information is necessary, especially to entities such as the National Health Insurance Fund (NHIF), which may face a sudden increase in payouts for dialysis which it would have been able to predict based on the recurring trends in increase in kidney disease.
Most of the times health information comes to Kenyans through press conferences called to address a matter that has arisen as a result of a disaster. For instance, shortage of blood is known to people after an appeal is made for urgent donation and recently after the US President’s Emergency Plan for Aids Relief (PEPFAR) announced that it would cut down funding for blood services in the country.
But there are very many indicators to show current state of blood availability, or lack of it, such as the high rates of maternal deaths caused by excessive bleeding and there being no blood to be transfused to these women.
Does it mean that our hospitals do not have information systems for data collection and reporting?
At the same time, data on the number of people waiting on a list for organs and the number of donors is also not available, yet there is a shortage, which we can tell by the frequency of people travelling outside the country to receive transplant services. It is mostly when a loved one needs a transplant and they have to go abroad that majority of Kenyans realise that there are no available organs and there are many others just like them in need of organs.
Based on this, when we say there is a shortage of organs and blood, which data are we relying on? Can we put the number of people in need of organs and blood against the number of organs and blood available in order to get the difference and make a conclusion on whether there is a shortage or not?
Also, if we do not have timely, sufficient and dependable health and health-related data records, how then will we achieve universal health coverage both in relation to the government’s Big Four agenda and the Sustainable Development Goal 3 (ensuring healthy lives and promoting wellbeing for all at all ages)? SDG 3.4 which, among other things, aims to reduce by one-third premature mortality from non-communicable diseases through prevention and treatment and organ transplantation, is one of the ways this can be achieved.
Besides scarcity of funds, there is lack of timely, sufficient and dependable health and health-related data records, and most especially in the public domain. It is time we realise and embrace the fact that information is power and transparency of this information will add humanity to what is generally thought of as faceless—in this case health data records.
This is a time that the world is seeking to achieve UHC in one of the most unprecedented rates ever perceived and we should take this opportunity to assimilate the practice of health data recording in our health system. Let us think of it as one major harambee, this time, not for purposes of sending one of us abroad for an organ transplant or calling on friends and family to donate blood for a loved one but rather to eliminate inadequacies in our health system by first, keeping timely, sufficient and dependable health and health-related data records.
Advocate of the High Court. Associate at Ibrahim Yakub & Associates Advocates. She is passionate about Medical Law and Ethics most especially the ethics of both living and deceased organ donation and transplantation