VALIDATION &

VISIONING WORKSHOP

SITUATIONAL ANALYSIS ON PATIENT REGISTRY

28 FEBRUARY 2011

Putrajaya International Convention Center

1

OVERVIEW OF THE

WORKSHOP

2

WORKSHOP OBJECTIVES

The objectives of the workshop are:

To validate the findings of the study; and

To get feedback on the proposed way

forward (visioning) for patient registry in

Malaysia.

3

WORKSHOP AGENDA

TIME ACTIVITIES

8.00 – 8.30 Registration

8.30 – 8.45 Opening Speech

8.45 – 9.30

Project and Workshop Briefing

o Overview of the workshop

o Overview of the Project (introduction,

objectives & approach)

9.30 – 9.45 Tea Break

9.45 – 11.00

Session 1 Validation

Current Environment

o Patient Registries in Malaysia

4

WORKSHOP AGENDA

TIME ACTIVITIES

11.00 – 12.45 Session 2 Validation Discussion

12.45 – 2.30 Lunch Break & Networking Session

2.30 – 3.45

Session 3 Visioning

Best Practices from other countries

Recommendation - Strategies & Way Forward

3.45 – 4.45 Session 4 Visioning Discussion & Conclusion

4.45 – 5.00 Closing & Refreshment

5

OVERVIEW OF THE

PROJECT

6

INTRODUCTION

• Patient registries are collections of secondary

data related to patients with a specific

diagnosis, condition, or procedure. It consists

of demographic data, diagnosis, treatment

history and outcomes of the patient

• Patient Registries in Malaysia started in 1993

• 31 patient registries have been established

and coordinated by CRC

28 have been registered in National Medical

Research Register (NMRR)

29 registries are active (still collecting data)

• 5 registries are not under CRC7

…INTRODUCTION

• Most registries are managed and maintained

independently, supported by different

department, institution or society

o This silo patient registry management

contributed to the non-optimum utilization

of resources; and

o Access of data are limited to specific

registry and are not shared between

registries.

8

…INTRODUCTION

Ministry of Health has requested MAMPU to

conduct a study called Situational Analysis for

Patient Registry along with Clinical Research

Center (CRC).

9

OBJECTIVES

The objectives of Situational Analysis of Patient

Registry are:

Identify the current environment in the data

management of patient registry, including data

collection and data sharing

Review the existing enabling environment to

support information sharing and policy aspects

of patient registries such as legislation,

governance and coordination; and of

infrastructure and standards

10

SCOPE

• Scope of the study involves the public

facilities and the associations that possess

the information and contribute the patient

registry data.

• Study will include the aspect of data

collection, data management and sharing of

data towards the implementation of the

Patient Registry in Malaysia.

11

EXPECTED OUTCOME

The study outcome will help Ministry of

Health to decide the direction of the

Patient Registries that can contribute

towards the quality improvement of the

healthcare in the country.

12

Project Milestone

ACTIVITIES DATE 2011 2012

Ju

l

Au

g

Se

p

Oct

No

v

De

c

Ja

n

Fe

b

Mac

Project Plan 22 July 2010

Project Charter 29 July 2010

Document Gathering 19 – 30 July 2010

Literature Review 2 – 30 Aug 2010Survey (Design, Data Collection & Analysis)

16 Aug – 15 Nov 2010

Site Visit 21 Sept – 5 Oct 2010

Interview14 Oct 2010 – 31 Jan

2011

Validation Workshop 28 Feb 2011

Visioning Workshop 28 Feb 2011

Final Report 1 – 15 March 2011

13

Project Governance

MOH STEERING

COMITTEE

PROJECT DIRECTOR

Dr. Goh Pik Pin |

Pn. Noriati Baharum

PROJECT MANAGER

Dr. Jamaiyah Haniff |

Pn. Siti Nurliza Mokhtar

PROJECT TEAM

Dr. Jaya Purany Stanley Ponniah - CRC

Pn. Siti Nurliza Mokhtar - MAMPU

Nur Ashikin Abdul Najib – MDEC

Naren Kumar Surendra - CRC

Harnani binti Tamat - CRC

Nur Sharmini Alexander - MAMPU

PROJECT SECRETARIAT

Dr. Jaya Purany Stanley Ponniah – CRC

Naren Kumar Surendra - CRC

Harnani binti Tamat – CRC

Nur Sharmini Alexander – MAMPU

Nur Ashikin – MDEC

SUBJECT MATTER EXPERT

(Specialist | Registry Owner |

Disease Control | Tele-health |

Cawangan Kualiti, BPP )

14

APPROACH

1. Survey

2. Interview

3. Literature Review

4. Site Visit

5. Teleconferencing

6. Workshop

15

APPROACH : 1. SURVEY

Online Survey was conducted on 27 September –

31 October 2010

Scope of the survey are includes:

• Data Collection;

• Data Sharing; and

• Issues and Challenges.

16

…APPROACH : 1. SURVEY

Methodology

• Online Survey http://ppict.mampu.gov.my/limesurvey/

17

…APPROACH : 1. SURVEY

Respondent Profile

Registry Custodian

• No. Of Registries : 19 of 30 Registries (63%)

• No. Of Respondent: 26

• Category : PI (10) , PM (13), Registry Member (3)

Source Data Provider

• No. Of SDP : 131 of 1610 (10%)

• Category : Doctor (63); Nurse (39);

• Research Officer (20); Others (9)

• Agency : Government (127); Non-government (4)

18

APPROACH : 2. INTERVIEW

PI Focus Group Interview (14 October 2010)

PM Focus Group Interview (14 October 2010)

Scope of the interview

• Data Collection

• Data Sharing

• Issues & Challenges

• Legislation

• Way forward (suggestion / opinion)

19

…APPROACH : 2. INTERVIEW

Stakeholder of the Patient Registry Interview

• conducted individually from December 2010 until

February 2011

No. Interviewee Date

1.

Dr. Paa Mohamed Nazir b Abdul Rahman

Cawangan Kualiti Penjagaan Kesihatan, Bahagian

Perkembangan Perubatan, KKM

14 December

2010

2.Puan Azza Azmi

Bahagian Penasihat Undang-undang, KKM

20 December

2010

3.

En. Muhamad Ali

Setiausaha Bahagian, Bahagian Pengurusan

Maklumat, KKM

13 January 2011

4.Dr. Md Khadzir Sheikh Haji Ahmad

Bahagian Pusat Informatik Kesihatan, KKM18 January 2011

5.Dr. Goh Pik Pin

Pengarah, Pusat Penyelidikan Klinikal, KKM31 January 2011

20

APPROACH : 3. LITERATURE REVIEW

Literature Review : 2 – 30 August 2010

Activities of literature review

• CRC Document Review

Patient Registry Unit (PRU)

Use of Healthcare Statistics Survey Data

Handbook For Establishing Quality Registries

• Patient Registry Document Review

• Patient Registry Form Review

• Patient Registry Related Document /Journal Review

• Patient Registry Related Website Review

link21

APPROACH : 4. SITE VISIT

Site Visit

• National Cardiovascular Database - 12

August 2010

• Kuala Lumpur Hospital – 19 August

2010

22

APPROACH : 5. TELECONFERENCING

Teleconferencing was conducted on 16 February

2011 with Nick Black, Professor of Health

Services Research.

Scope of the teleconference - Best Practices in

implementation of registry

• Data Collection

• Data Sharing

• Issues & Challenges

• Legislation

• Way forward (suggestion / opinion)

23

APPROACH : 6. WORKSHOP

Validation & Visioning Workshop is conducted on

28 February 2011

Participant :

o Policy Maker

o Principal Investigator

o Project Manager

o Source Data Provider (Hospital, Clinic,

University)

Objective of the workshop

• To validate the findings in the study; and

• To get feedback of the proposed way forward for patient

registry. 24

THANK YOU

25

…APPROACH : LITERATURE

REVIEW

... Activities of literature review

• Patient Registry Related Document /Journal

Review

COTDS Data Centre Co-Location & Administration

Report 2010

Accuracy of Clinical Data in a Population Based

Vascular Registry

A Review of State Legislation Related to Immunization

Registries

Approaches To Quality Control With An Application To A

New Cancer Registry In A Developing Country

Categorizing the world of registries

The value of trauma registries

26

…APPROACH : LITERATURE

REVIEW

• ...Patient Registry Related Document /Journal

Review

Contemporary Mortality Risk Prediction for

Percutaneous Coronary Intervention

Creating a global rare disease patient registry linked to

a rare diseases biorepository database: Rare Disease-

HUB

Data quality at the Cancer Registry of Norway: An

overview of comparability, completeness, validity and

timeliness

Developing a Population-Based Registry for Patients

with Paraproteinemias or Multiple Myeloma

27

…APPROACH : LITERATURE

REVIEW

... Activities of literature review

• Patient Registry Related Website Review

Article / journal database www.sciencedirect.com

Patient Registry Special Interest Group

http://www.ispor.org/

National Registry of Diseases Office (NRDO) of

Singapore http://www.nrdo.gov.sg

Pan-Asian Resuscitation Outcomes Study

http://eparos.org

Journal of the American College of Cardiology

http://content.onlinejacc.org/

link28