The Missing Factor (Pakistan)

It was some years back that to combat the global epidemic of cancer, the World Health Organization produced a guideline titled National Cancer Control Programmes (NCCPs). Ever since, it has been under constant review and its last up-date was issued in 2002.

In Pakistan, the system was introduced in 1996. The WHO undertook a scheme to register patients diagnosed with malignant tumours. The idea was to form a network by linking up some of the health care providers.

A dial in the system was set up. Computer equipments were installed in 10 centres across the country. The sole purpose was to try and create a national cancer registry. Very basic internet facilities were available in those days. Some of these centres were not keen on transmitting their data. As a result, operations were stalled at the implementation stage.

Earlier, in 1995, the provincial government of Sindh had accomplished the feat of establishing a population-based cancer registry (PBCR) covering southern sectors of a provincial metropolis.

The Karachi Cancer Registry is housed in the pathology department of the Sindh Medical College. The KCR has been given a mandate to cover the entire Karachi division. The patronage of the International Association of Cancer Registries (IACR) is there. They are doing a tremendous job by publishing their research work at national and international levels. It was very nice to note its director's willingness to carry out collaborative research in oncology.

The newly created pathology-based tumour registry at the Aga Khan University Hospital has been granted an associate member status by the IACR. It is a very encouraging sign. Both the organizations are directed by the same person.

This scribe had the privilege of visiting the South-Western Regional Cancer Registry which is now a part of the South West Public Health Observatory in the United Kingdom in 1993. I underwent training in cancer registration under the tutelage of some renowned epidemiologists.

This included spending a few days at the International Agency for Research on Cancer (IARC). Back home in 1994 my idea was not received very well. Even now there is paucity of available literature in Pakistan on this subject, that is, cancer epidemiology.

The absence of a PBCR in Lahore has been mentioned by several observers. A major drawback in the studies on cancers is that they are usually based on extrapolation of data obtained from one particular institution. The centralized data capture is of paramount importance. Multitudes of other considerations are secondary in nature.

It is time we developed a system to gather together some data about patients suffering from cancer.

In this regard, a short debate was carried out by a Karachi English daily during the first quarter of 2003. In late March 2003, the then Executive Director of Pakistan Institute of Medical Sciences ruled out any possibility of a cancer data set coming into existence.

In the same press statement he disclosed that some doctors had proceeded to the IACR, Lyon (France), for fellowship training. That was the end of discussion at that time.

In this context it must be mentioned that a WHO survey of 167 countries in 2001 assessed the national capacity for prevention and control of cancer, as well as other non-communicable diseases.

It is part of the WHO policy for an integrated approach to prevention and control of non-communicable diseases. Through a WHO global forum on non-communicable diseases, the WHO and its partners are working to establish similar networks for integrated non-communicable disease prevention in the eastern Mediterranean region.

THE CURRENT SITUATION: There was another spurt of activities one month later. In a symposium held at the recently chartered University of Health Sciences, Lahore, speakers emphasized the need for compiling statistics at a national level for diabetes mellitus, cancers and other chronic medical problems causing significant disease burden on our community.

The federal minister for health was among those who attended the symposium. During the same month a local newspapers carried a statement by the chief executive of Shaukat Khanum Memorial Cancer Hospital and Research Centre in Lahore, making his intentions known for the revival of 1996 National Cancer Registry project.

Not much else has been made public. My information is that apart from the SKMCH, Jinnah Hospital's oncology department, the IACR and the Belgium-based International Network for Cancer Treatment and Research (INCTR) have joined hands. This is a project with multiple implications.

The planning phase is proceeding with due deliberations. Latest news is that the National Cancer Registry scheme has been shelved and attention has been focused on evolving a cancer registration system in the province. More than 10 hospitals are cooperating in Lahore.

The PMRC maintains its own pool of cancer records and is doing a feasibility study for a second PBCR in Karachi. Medical institutions belonging to the armed forces and the Pakistan Atomic Energy Commission have their own computerized medical records.

Some are updating their systems to create tumor registries in the respective hospitals. Significant assistance is being provided by the World Health Organization for these important projects.

The Punjab minister of health hinted at starting a pilot project for a cancer registry system in Lahore district, when he chaired a tumor board meeting at a tertiary care hospital in May 2004. On July 24, 2005, Punjab chief minister chaired a high level meeting of the health department in which it was decided that a centre of excellence for oncology be established in Lahore.

It shows the political commitment for the adoption and implementation of policies, which are in line with NCCP 1995 Guidelines of the WHO. All the four principles (prevention, early detection, treatment and palliative care) of these guidelines are being prioritized by the Punjab government.

GETTING ONLINE: A little slow on the uptake we must act now.

It is time that all cancer hospitals, oncology, pathology, radiotherapy, radio diagnosis, radiology and other clinical departments make a coordinated effort for integration. For institution, oncology and pathology based tumor registries to be able to link up and share a larger pool, enlisting in a proposed directory of hospital tumor registries in Lahore should be the next step in this direction.

Better organization leads to improvements. We have not even attained the era of punch and index cards. Possessing electronic records is the first logical consideration. Documentation ought to be done according to standard recommended protocols using simple interoperable software.

This may require personnel trained in medical/health informatics and medical databases as well.

Taking account of one decade of maturity factor and subsequent stability now is the time. One big collective effort and every one will reap the rewards. Remember, cancer epidemiology is a multi-disciplinary specialty.

SUGGESTIONS: Although 1996 model was specifically designed by the WHO for developing countries like ours, it could not achieve its objectives for the reasons cited above. Apparently, this was the only fault with this endeavour. Start at the grass roots level.

A meeting of INCTR and IARC officials in December 2002 has been reported by Network (INCTR newsletter). This carried information about a plan to establish a PBCR in Lahore district, as well as consideration of utilizing other available resources

Efforts of the IACR in promoting the cause of cancer registries are of critical significance. It is heartening to read that the IARC are focusing their attention in the region in a systematic fashion, as per the World Health Organization charter. At this juncture, I submit the following suggestions:

Information and data are the essentials of epidemiology. The dynamic process of maintaining a medical repository cannot be a complete entity without involving general practitioners and other tiers of our health care. There has to be some form of legislation.

As for awareness among the masses, electronic and print media along with the medical press would have to play a more active role, as this is most decidedly a public health medicine issue.

If desirable results are realized, the pilot project of Lahore Cancer Registry could devise a model for other districts to follow. Think of a databank of patients with neoplasia as an impetus for other medical databases in addition to being a starting point for the proper introduction of medical informatics in Pakistan.

Incentives are given to pharmaceutical giants. Data can be useful for running clinical trails of their latest anti-neoplastic products. The same stands true for competing software providers.

Clinical data is the precious property of a department or a hospital but there should be no reason preventing them from reporting it to a central storage facility in a complete format, for multiple uses.

All cancer-related departments should be able to allow independent researchers (both foreign and domestic) to access their records if confidentiality can be ensured. A PBCR is like a forum for all those involved with research on cancer.

CONCLUSION: Keeping the demographics in mind, smaller cancer intelligence units shall be an easier proposition to manage. Multiple independent PBCRs at district level can better feed a national cancer data warehouse, the need for which cannot be obviated. The best example to be followed exists in England.

I am also very confident that the entire health community in Pakistan and some international development organizations are monitoring the developments with interest. We should let them know that Pakistanis are not oblivious of the whole new revolution taking place in medical sciences with the recent advances in information technology.

Overseas organizations will certainly comprehend our efforts to modernize health care industry. We are all very grateful to them for lending a helping hand. This will certainly be mutually beneficial. Once again for all those concerned, it has to be a collective effort.


7-A St. One Ghousia Colony (behind Wahdat Colony) Lahore 54600 Pakistan 92 (0345) 4242698

Article from Dawn Magazine, 12/05

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