Indonesia Cancer Registry.

Current Situation

Evlina Suzanna,MD
Coordinator Collecting and Data Analysis of Indonesia
National Cancer Registry. Department of Health
Number of Population and Province in
Indonesia.
(Sensus 2005)

33 Provinces
218.086.288 Population
M : 109.613.519
F : 108.472.769
 Number

10,000,000
15,000,000
20,000,000
25,000,000

5,000,000

0
es Ac
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um
at
er
a
Ja
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Be
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Ba
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C D
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Ja
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Ba
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Ea
st
Se N
T

Provinces
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ra
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al
m
Ea
st
Ka
lm
Se
nt
So ra
lS
ut ul
h
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Su
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W
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N
Male

or
th
M
Distribution of Population in Indonesia

Female

al
Pa
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a
History of Cancer Registry In Indonesia
2006 Hospital Based Cancer Registry in
Jakarta as a model à Population Based
Cancer Registry.

1987 Pathological based Cancer Registry,

13 Centers Diagnostic of Pathology
in Indonesia

1970 Population based Cancer Registry in

Semarang, Central Java.
Population Based Cancer Registry

Semarang, 1970
KLATEN,1998
 The 10 Commonest Malignancy in Semarang,
1990 -1999.
Female Male

Cervix 21.77 Lung 14.08

Breast 14.84 Colorectal 6.76
Colorectal 6.26 Liver 5.65
Ovarium 5.16 Prostat 5.63
Lung 4.83 Vesica Urinary 4.69
Topo

Topo
Skin 4.6 Nasopharyx 3.78
Unknown 3.26 Skin 3.62
Corpus Uteri 3.01 Lymphoma 3.62
Lymphoma 2.67
Unknown 2.82
Thyroid 2.05
Thyroid 1.18
0 5 10 15 20 25
0 2 4 6 8 10 12 14 16
ASR ASR

Prof Sarjadi,MD.
Pathologist.
1988 IAP Indonesia,
13 Centers Diagnostic of Pathology
1. Medan.

2. Padang

13 Manado
3.Palembang

4. Jakarta

5. Bandung

12 Makassar

6. Surakarta
7. Yogjakarta
8. Semarang 11 Bali
9. Surabaya
10. Malang
 The 10 commonest cancer in Indonesia
13 Centers of Pathology 1990 – 1999.
4500
4000
Cervical cancer
3500 Breast cancer
Skin cancer
3000
NPC
2500 Ovarial cancer
Lymphoma malignum
2000
Rectal carcinoma
1500 Thyroid carcinoma
STSs
1000
Colon carcinoma
500
0
1990 1991 1992 1993 1994
 The 10 Commonest Cancer in Indonesia
13 Centers of Pathology 1990 – 1999.
4500
4000
Cervical cancer
3500 Breast cancer
Skin cancer
3000
NPC
2500 Ovarial cancer

2000 Lymphoma malignum

Rectal carcinoma
1500 Thyroid carcinoma
STSs
1000
Colon carcinoma
500 Lung cancer

0
1995 1996 1997 1998 1999
 THE TEN COMMONEST MALIGNANCY
in "DHARMAIS" NATIONAL CANCER CENTER 1995 - 2004

350

300
Cervical Cancer
Nodal Lymphoma

250 Breast Cancer

Skin Cancer
Colorectal Cancer
200
Ovarial Cancer
NUMBER

Nasopharynx
Leukemia
150
Bronchus and Lung
Soft Tissue Sarcoma
100 Bone Sar coma
Ca Corpus Uteri
Thyroid Gland
50

0
1995 1996 1997 1998 1999 2000 2001 2002 2003 2004

YEARS
 GLOBAL DEATHS BY CAUSE, ALL AGES 2005

17.528.000

CARDIO-
VASCULAR
DISEASES

7.586.000

CANCER 4.057.000
2.830.000
1.607.000
883.000 CHRONIC
RESPIRATORY 1.125.000
HIV/AIDS TUBER- DISEASE

CULOSIS MALARIA DIABETES

***Sumber: WHO dan WorldBank 2005

 Trend of Pattern of diseases causing death in
decade in Indonesia
SKRT 1992, 1995, 2001
Percentage
35

30

25

20

15

10

0
Inf & Par Sirkulasi Pernapasan Sal. Cerna Neoplasma Kecelakaan Perinatal

1992 1995 2001

Report of SKRT 2001: Morbidity & Disability study, Litbangkes 2002

Definition
Cancer registration may be defined as the
process of continuing, systematic collection of data
on the occurrence and characteristics of reportable
neoplasms

The cancer registry is in the office or

institution which attempts to collect, store,
analyze and interpret data on persons with cancer.
The main objective of the cancer registry

• To collect and classify information on all

cancer cases in other to produce statistics
on the occurrence of cancer in a defined
population and

• To provide a framework for assessing and

controlling the impact of cancer on the
community
 Source of Data

CLINICS

LABORATORIES

VITAL STATISTICS
DEATH CERTIFICATES
HOSPITAL
Case 61
PB
case 1 Hospital 1
HB1
Hospital 2
case 2
HB2
Hospital 6
case 6 HB6

Hospital 4
case 4
case 5 HB4 Hospital 3
HB3
Hospital 5
Case 3
HB5
Hospital n.. Case 31
Case n.. Hb n...

Case51
PB = case 1-6, n.. PB= population-based
HB3= case 3, 31 HB= hospital-based
Cancer Incidence in Indonesia
New cases of cancer
As
Absolute numbers
Proportion (percent) of total
Rate per (100.000) population at risk, per (year)

?
?
? ?
? ?
 Measuring the Burden of cancer
in Indonesia

• Incidence
• Mortality
• Person-years of life lost (PYLL)
• Quality adjusted life years (Lost) (QALYs).
• Disability adjusted life years (Lost) (DALYs)
• Survival
• Prevalence
 MOH of RI Organization Structure, 2006
Ministry of Health

Secretary General

DG of DG of DG of Disease DG of Inspectorate
Medical Pharmacies Public Health General
Control & EH
Services & med-supp
Secretary of DG of DC & EH

Directorate Directorate Directorate Directorate of Directorate

of SESPIM of DCDC VBDC NCDC of EH

Subdit Subdit. DM & Subdit. SubDit Subdit.

Cardiovas Other Metabolic Chronis & Cancer Violence &
degenerative Injury
 Revitalization of
Jakarta Cancer Statement
By WHO SEARO, UI, UICC and Presiden
Soeharto
in 1995 à Action Plan.

On 10th-11th there will be the launching of

Indonesia NCCPs by DNCC and MOH, together
with all Health Professional, NGOs to unify the
Activities in Cancer Control Programmes.
All the parties concern will make action plan for
the coming years.
 Legal Aspect
• Undang-Undang RI No : 29 th 2004 ttg Praktek
Kedokteran (Psl 46) à wajib membuat Rekam
Medis.
• Kepmenkes RI No.604/Menkes/SK/IX/1989
ttg Pokok-pokok penanggulangan penyakit
kanker di Indonesia à Registrasi kanker
• Kepmenkes RI No: 1575/Menkes/Per/XI/ ttg
Organisasi dan Tata kerja Depkes RI à
Direktorat PPTM (Subdit kanker).
 LAMPIRAN PERATURAN MENTERI KESEHATAN R.I.
NOMOR : 1684/Menkes/Per/XII/2005.
TANGGAL : 27 Desember 2005

STRUKTUR ORGANISASI RUMAH SAKIT KANKER DHARMAIS JAKARTA

DIREKTUR DEWAN
UTAMA PENGAWAS SATUAN
PEMERIKSA
INTERN
KOMITE
KOMITE DIREKTUR
ETIK DAN DIREKTUR DIREKTUR
MEDIK HUKUM MEDIK DAN KEPERAWATAN SUMBER DAYA MANUSIA KEUANGAN
DIREKTUR
DAN PENDIDIKAN UMUM DAN OPERASIONAL

BAGIAN BAGIAN BAGIAN BAGIAN BAGIAN BAGIAN

BIDANG BIDANG BIDANG BAGIAN BAGIAN VERIFIKASI & BAGIAN
PENDIDIKAN DAN PENELITI AN DAN PENYUSUNAN & PERBENDAHARAAN
AKUNTANSI PROGRAM DAN PELAY PELANGGAN
MEDIK KEPERAWATAN REKAM MEDIK SDM EVALUASI ANGGARAN & MOBILISASI DANA UMUM
PELATIHAN PENGEMBANGAN SIM RS

SUBBAGIAN SUBBAGI AN
SEKSI SUB BAGIAN SUB BAGIAN SUBBAGIAN SUBBAGIAN AKUNTANSI SUBBAGI AN SUBBAGIAN
SEKSI SEKSI SUB BAGIAN PENGEMBANGAN
CATATAN MEDIK ADM.INISTRASI PENGELOLAAN
PENYUSUNAN PERBENDAHARAAN KEUANGAN TATA USAHA PROMOSI
PELAYANAN -MED RAWAT JALAN PENELITIAN ANGGARAN SIM RS
KEPEGAWAI AN DIKLAT

SUBBAGIAN SUBBAGI AN SUBBAGIAN SUBBAGIAN

SEKSI SEKSI SUB BAGIAN SUB BAGIAN SUB BAGIAN SUBBAGIAN SUBBAGIAN VERIFIKASI & RUMAH TANGGA & PENYUSUNAN PENGEMBANGAN
SEKSI EVALUASI
PENUNJANG ADMISI PENGEMBANGAN PENGELOLAAN PENGEMBANGAN MOBILISASI DANA AKUNTANSI
HUMAS PROGRAM USAHA
RAWAT INAP ANGGARAN MANAJEMEN
MEDIK SDM SARANA DIKLAT SARANA PENELITI AN
SUBBAGIAN
SUBBAGI AN SUBBAGI AN
DATA DAN
SEKSI SEKSI SUB BAGIAN SUB BAGIAN SUB BAGIAN PERLENGKAPAN PEMASARAN
SEKSI LAPORAN
PENING & PENGEN PENGKODEAN DAN PERENCANAAN PERPUSTAKAAN REGIS TRASI
RAWAT KHUSUS
DALIAN MUTU YAN.MED. PENYIMPANAN SDM DAN DOKUMENTASI KANKER

INSTALASI INSTALASI INSTALASI

INSTALASI
STAF MEDIK INSTALASI INSTALASI
INSTALASI INSTALASI
FUNGSIONAL

MENTERI KESEHATAN,

Dr. dr. Siti Fadilah Supari, Sp.JP (K)

 Working Programmes
2007-2008

Training/Socialization 28 Hospts à40 Hospts DKI Jaya

Hospital based àPopulation based : 2005 2006 2007 à 2008

Software CanReg4 – SRiKandI (32variables)

Hardware Computers, Server, Networking device.
Brainware Registrar, Pathologist, Oncologist,
Specialist, GP, Statistician, etc

Office space/
archives With special permit/restricted room.

Funding National/Province budged/ Hospital/

WHO, Others
Capital city of Indonesia : Jakarta
 Indonesia (2005)
218.086.288 Population
1,408,711 75- 1,462,776

1,470,205 70- 1,570,199

1,990,762 65- 2,192,385

2,800,974 60- 2,918,499

3,813,793 55- 3,563,361

5,266,079 50- 4,851,176

6,418,712 45- 6,190,218

7,401,933 40- 7,347,511

8,344,025 35- 8,428,967

8,709,370 30- 9,054,955

9,271,546 25- 9,821,617

9,754,543 20- 10,150,607

10,370,890 15- 9,958,783

11,238,221 10- 10,614,026

11,370,615 5- 10,739,089

9,983,140 0- 9,608,600
-12,000, 0 2,000,000 4,000,000 6,000,000 8,000,000 10,000,00 12,000,00
12 -10,000,
10 -8,000,0
8 -6,000,0
6 -4,000,0
4 -2,000,0
2 0
0 0 2 4 6 8 10 12
000 000 00 00 00 00 0 0

Male (%) Female (%)

109,613,519 TOTAL 108,472,769
Indonesia, Jakarta (2005)
21,090 75- 24,843

33,549 70- 41,589

59,524 65- 57,523

88,452 60- 77,440

132,016 55- 130,224

201,932 50- 186,628

244,639 45- 230,399

307,293 40- 307,977

416,885 35- 356,711

451,377 30- 445,717

505,945 25- 536,794

485,929 20- 549,923

358,987 15- 426,285

353,062 10- 375,802

366,009 5- 350,138

364,057 0- 350,508
-600,00 -500,00 -400,00 -300,00 -200,00 -100,000 0 0 100,000 200,000 300,000 400,000 500,000 600,000
600 500 400 300 200 100 0 0 100 200 300 400 500 600
0 0 0 0 0

Male (%) Female (%)

4,390,746 TOTAL 4,448,501
 Distribution of Jakarta Population

9,000,000

8,000,000

7,000,000

6,000,000

5,000,000 Male
Number Female
4,000,000
Total
3,000,000

2,000,000

1,000,000

0
Jakarta Centrl East West North South

Region
Mortality in Jakarta in 2006
Cancer Mortality Among Total Death
in Jakarta in 2006 ( 4 Hospitals)
40 Hospitals in Jakarta Cancer Registry as a Model
National Cancer Registry PM.01.02/V/530/07
RSUPN Cipto Mangunkusumo RS ATMAJAYA
RSAL Mitoharjo RS Gading Pluit
RSPAD Gatot Subroto( Reg of Central) RS Fatmawati (Regional of South)
RSIslam Jakarta RS MMC
RS Tria Dipa RS Medistra
RS Carolus RS Pondok Indah
RS Keramat 128 RS Tebet
RS Husada RS Jakarta
RSB Budi Kemuliaan RS Pusat Pertamina
RS PGI Cikini RS Persahabatan (Regional of East)
RSK Dharmais (NCCPs), (Reg of West) RS POLRI Pusat
RSK RS Cengkareng RS Budi ASIH
RS Tarakan RS UKI
RSAB HarKit (Childhood Cancer Reg) RS Mitra International
RS Pluit RS Haji Jakarta
RS Sumber waras RS Dharma Nugraha
RS Pelni Petamburan RS Omni Medical center
RS Koja (Regional of North) RS Islam Jakarta Timur
RS Pantai Indah Kapuk RS Pasar Rebo
RS Mitra Klp Gading RS Sumber Waras
 Cancer Registry Activities in 40 Hospitals
in Jakarta
RS Fatmawati (South Regional ) RSUPN Cipto Mangunkusumo

RS Sumber Waras RS MMC

 Cancer Registry Activities in 40 Hospitals
in Jakarta
RS POLRI Pusat RSAB Harapan Kita
(Childhood Cancer Reg)

RS Pasar Rebo

RSPAD Gatot Subroto

( Central Regional )
 28 Hospitals in Jakarta
14 Private Hospitals 14 Govern Hospitals
Board Committee 77% 85,71%
Pathologist 77% 78%
Surg Onc 77% 50%
Medical Onc 77% 35%
Registrar 55,56% 42%
Staf MR 77% 100%
Staf morbid 66,67% 85%
Ahli Epid 33,3% 14%
Ahli statistik 44% 28%
Entry data/IT 66,67% 78%
 28 Hospitals in Jakarta
14 Private Hospitals 14 Govern Hospitals
Office/Room 11% 57%
Hardware 44,% 64%
Software 0 42%
Internet system 1% 57%
Cabinet 33% 57%
Hosp Policy 33% 35%
Dana 11% 7%
 Network System in National Cancer Registry : 40
Hospitals in Jakarta as a Model

REG RS Fatmawati

RS Persahabatan REG RSPAD -GS

REG

Dharmais NCC

RSKD REG REG RS Koja

HCR : Hosp. Cancer Reg. NCR : National Cancer Reg.

DRC : Disaster Recovery Center RCR : Regional Cancer Reg.
Establishment of National Cancer Registry in Indonesia

Regional Cancer Centre

National Cancer Centre
South Sulawesi
 Cancer Registry System in South Sulawesi

REG RS Bone

RS Palopo REG RS Pare-Pare

REG
Wahidin
Hospital

RS Makassar
REG REG RS Bulu
Kumba

HCR : Hosp. Cancer Reg.

DRC : Disaster Recovery Center
RCR : Regional Cancer Reg.
 Establishing National Cancer Registry
Action Plan.
Hand book /Regulation (SK-SK)
Planning SOFTWARE
Meeting and Training
(2007) Planning
SOS &ADV Central to Hospt, PROP,KAB/KEC

Sos & Adv Central, Hospt, DINKES PROP/KAB

Activity Meeting and Training in MOH
(2008) REGIONAL.
Data Verification and Validation

Monitoring
Evaluation Monitoring and Facilitate
Dissemination of Information
(2008- 2010)
 Job Description
National Cancer Registry
Central National Cancer Data
“Dharmais” Data Collecting and Analysis
NCC Verify and Validate
Regional Cancer Data
Regional Data collecting and verify
Hospitals from Municipal govern and Private hospt

Municipal ENTRY DATA

Hospitas Sending data to Regional Hospital

DINKES PROP/ KADINKES, SUBDIN P2PL& YANKES

Municipals Management support
 Resources

HR/ Hospital Management

Pathologist/Oncologist/Stastiticion/
Brain ware GP/REGISTRAR

Facilitate Room office/HARDWARE/ SOFTWARE

EQUIPMENT Networking/Abstract,/tools etc

National/Regional Budget
Funding
WHO
 Cancer Registry Software

International Association of Cancer Registries (IACR)

International Agency for Research on Cancer (IARC)
 Indonesia Cancer Registry Software
Sistem Registrasi Kanker di Indonesia
International Classification of
Diseases for Oncology v.3
 Outline of Registration Procedure
Cancer Pathology & Hospital Death
notification forms other reports discharges certificates
Request
information
clarification
Form complete and No
No correct Mention of
Ignore
cancer
Yes Yes

Check patient index Check patient index

No
New cancer patient New primary
New cancer patient
No
Check previous Yes
notification Yes Request notification or information Yes
from related persons

Yes From complete & correct

New primary
No
Yes
REGISTER CASE New
No reg. number

Update record Computer file Update record

 Quality of data
Jakarta Cancer Registry as a Model

% Histological verified, DCO

2005
2006
2007
2008
 Quality

• Coverage • Histology verified

• Completeness • Cause of death
• Reliability: • DOB, ID
cancer/non-cancer • Death certificate
• Follow up: last date, notification
status • Treatment (Hosp-
• Staging based)
 Management support in Hospital based cancer
registry activities in 40 Hospitals in Jakarta
45

40

35

30 Hospital
Cancer Team Work
25
Number

Brainw are

20 Hardw are
Softw are
15
Room/office

10

0
Cntrl Jkt West Jkt East Jkt Sout h Jkt Nort h Jkt Tot al
Hospt

Area
 Result in 12 Months

From 40 Hospital – only 31 Hospitals

sent the data, only (86,53% data) can be
analysis.
 Total Data Analysis, 2005 (40 Hospitals)

4600

4400

4200
Number

4000
3800

3600

3400
Verify1 Verify2 Verify3 Verify4
Activities
 % Histology Verification, 2005

80
70
60
50
Percent

40
30
20
10
0
Clin Rad Surg Lab Cyt Hist MV Autop Unk
Only Metas
Basic Diagnosis
The Ten Commonest Malignancy in Female
in 31 Hospitals in Jakarta, 2005
Breast Ca
Cervix Ca
Ca Ovarium
Leukaemia
TOPO

Colorectal Ca
Thyroid Ca
Nasopharynx Ca
Lung Ca
Skin Ca
Liver Ca

0.00 5.00 10.00 15.00 20.00 25.00 30.00 35.00

Percent
The Ten Commonest Malignancy in Male in
31 Hospitals in Jakarta, 2005
Nasopharynx Ca 12.00
Lung Ca 11.50
Leukemia 11.10
Colorectal Ca 10.80
TOPO

Lymphoma 6.90
Prostate Ca 6.00
Liver Ca 4.70
Skin Ca 2.90
Brain Ca 2.60
Gaster Ca 2.00

0.00 2.00 4.00 6.00 8.00 10.00 12.00 14.00

Percent
 Result in 6 Months
• From 40 Hospital – only 30 Hospitals sent the
data, only from 24 Hospitals data can be analysis
(87% data)
• Consult data analysis to IACR – to get Cancer
Distribution in Jakarta
• Follow-up the Problems : Hardware - Software –
Brainware and Funding.
• National Policy for Cancer Registry model in
Jakarta
• In 2008 Establish NCCPs based on data 40
hospts as a Pilot Project.
 Total Data Analysis, 2006 (40 Hospitals)

5000

4900

4800

4700

4600
Number

4500

4400

4300

4200

4100

4000
Total Cases Enrty Data Verified Analysis
Data
 The Ten Commonest Malignancy in Female
in 24 Hospitals, 2006
Breast 34.48

Cervix 16.13

Leukemia 5.99

Ovarium 5.11

Thyroid 3.39
Topo

Lymphoma 3.02

Nasopharynx 2.6

Lung 2.26

Skin 2.14

Colorectal 2.14

0 5 10 15 20 25 30 35 40
Percent
 The Ten Commonest Malignancy in Male
in 24 Hospitals, 2006

Leukemia 13.91

Nasopharynx 12

Lung 11.67

Lymphoma 5.92

Tongue 5.36
Topo

Colorectal 5.28

Prostate 3.28

Mediastinum 3.28

Brain 3.12

Skin 2.8

0 2 4 6 8 10 12 14 16
Percent
 Challenges and Obstacles

Commitment of the Department of Health

• Policy Jakarta Cancer Registry as a Model
• Issue on confidentiality (private physicians)/Private Hospital
• Lack of Budgeting/No special Budget from Government
Lack of Human Resources.
• Training of newer registry assistants
• Keeping the well-trained staff
Increasing awareness of the general public and
concerned parties
• Professional Organization (POI, IAPI, PERABOI, PORI, PDSRI,
HOGI, MABI) Management Hospital and Private Sector.
Network system : Computerization
 The Planning of NCCPs of Indonesia
1. Legal aspect
CD 2. Socialization and advocatie
3. Programme development
4. Humant invesment
Intervention 5. Networking
6. Surveillance
7. Logistic
8. Monitoring and evaluation
NCD
9. Budget development

Under Developing Developed

2006 2009 2010 2014 2015 2019

Fundamental Sustainability
development Strengthening
 National Cancer Control Programmes

Environment
Conductor Impact :
Diet & Cancer
Program
Risk Factor
food

Hormonal
Colaborate with
Physical Activity • Professional Organization
• Indonesia Cancer Foundation
Behavior
• Board committee of NCCPs
Occupation • University Society network
Genetic/Screening • Others Foundation
MORBIDITY
Tobacco Control MORTALITY
Policy of NCCPs
Ca Patients
Vaccination
WHO 1982
1982,, “Do not put years but life into years “
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