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VALIDATION &
VISIONING WORKSHOP
SITUATIONAL ANALYSIS ON PATIENT REGISTRY
28 FEBRUARY 2011
Putrajaya International Convention Center
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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.
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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
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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
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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.
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…INTRODUCTION
Ministry of Health has requested MAMPU to
conduct a study called Situational Analysis for
Patient Registry along with Clinical Research
Center (CRC).
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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
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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.
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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.
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Project Milestone
ACTIVITIES DATE 2011 2012
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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
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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 )
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APPROACH
1. Survey
2. Interview
3. Literature Review
4. Site Visit
5. Teleconferencing
6. Workshop
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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.
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…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)
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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)
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…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
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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
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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)
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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
…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
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…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
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…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/
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