facilitating research within the current governance framework ? dr davida de la harpe assistant...
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Facilitating Research within the Current Governance Framework?Dr Davida De La HarpeAssistant National Director of Population Health
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Outline The HSE, Health Intelligence and Population
Health in the HSE and health service transformation
Research and clinical audit
Work so far
Current Challenges
Future
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Selling health intelligence ?
In its widest sense –
Developing and using knowledge to improve health
outcomes for the population
(Instead of following deeply held yet unexamined ideologies)
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Health Services Executive Transition to unified health delivery system
represents biggest change management project in history of the state– Advantages – uniform interpretation of policy– Much stronger leverage to drive change, put
into practice international evidence of best practice, recommendations from local studies, audits, transfer learning and models of good practice
– Opportunity to apply resources strategically in line with best intelligence
HSE has adopted a population health approach
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Executive Structure
CorporateServices
Office ofthe CEO
Health Services
Corp. Plng.& Ctrl.
Processes
CEO
Board
Audit
Reform & Innovation
ICTSharedSrvs.
Procure Estates
Support Services
NHOPCCCPopulation
Health
HR Finance
SPRI Steering Group& Unit
Expert Advisory Groups *
Children *
Ageing *
Disability *
Cancer *
Surgery *
A & E *
* Examples
RHO
Consumer
Quality & Risk
C / PAD
Board / Sec
Comms.
Medicine *
Mental Health *
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promotes and protects the health of the
whole population or sub – groups, with
particular emphasis on reducing Health
Inequalities
Population Health Approach
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Population Health National Directorate Director of Population Health –
medical‡ 3 Assistant National Directors –
medical‡ 3 Assistant National Directors –non
medical + 1 transition non-medical) ‡ Public health doctors - subject to
same professional standards as other specialities including confidentiality
‡ HI. SHP.HP
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Public health practice Protecting the health of the public Epidemiology, surveillence, programmatic
evaluations provision of clinical services (health protection, infectious diseases,evidence based care pathway development)
Collection and analysis of identifiable health data for purpose of protecting health of group or community- not research
But may also engage in research in these and other areas
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health intelligence commitment
Gather the facts and information necessary to make more informed and intelligent decisions
Keep pace with new evidence
Use the new facts to support updating practices
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Health Intelligence components
Admin support
Specialised services
Research And
Development
EBHC
Strategic information
systems
Health Information
unit
A/NDHI
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Research
The systematic investigation into, and study of materials, sources etc in order to establish facts and reach new conclusions.www.wit.ie/library/olas/glossary.htm
Today's health research is tomorrow's health care
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Our main research settings
Population based research Clinical settings-
hospital,primary care and other clinical settings and the interfaces
Laboratory
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Research continuum Biomedical and clinical research
has made great progress in identifying ways to prevent and treat common and uncommon conditions and manage chronic illness.
Health services research complements and builds on the findings of clinical and biomedical research.
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The gains for our population Health services research, unlike
biomedical research, can provide insight into which care settings, including home or community-based care, are best and which risk factors are associated with entering these settings-patient centred-complex settings
Quality issues and outcomes
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Issues for research Prospective research- patient consent Retrospective - extract information –
anonymise Follow-up- permission and consent Clarity and explanation about how data
and information will be used Safeguards on data storage etc Usually clearly signalled by ethics
committees if not already part of proposals
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Current HSE work in research area Support for research Draft research strategy METR Ethics processes Commissioning Partnerships
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Clinical Audit Clinical Audit was introduced to the NHS
in 1993. -an essential element of professional practice in the Health Service. Now integral to HSE work
a quality improvement process that seeks to improve patient care and outcomes through systematic review of care against explicit criteria and the implementation of change
Governance of our services
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Clinical audit vs research Clinical Audit and Research are closely
related but distinct disciplines Research is about creating new
knowledge e.g about whether treatments work or whether one treatment works better than another
Clinical Audit is about making sure that this knowledge is being used to best effect so that outcomes for patients are as good as they should be
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Context patients/clients of healthcare
services have specific rights in relation to their personal health information.
Right to non-disclosure Right to make a complaint to the
Data protection Commissioner if they are unhappy how their personal information is used.
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Current Process Patients/client give personal health
details to healthcare professionals as part of their care process.
The extent to which they are informed of the purposes to which their information will be used is variable (Fair obtaining and processing - consent)
Not specifically told their data may be used for clinical governance purposes
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Current Process No written informed consent obtained for
the future potential use of their data for clinical governance/audit purposes
For prospective clinical audit work, informed written consent is usually obtained
Healthcare professional and clinical audit staff anonymise the data (No disclosure-unless compatible). Are Clinical Audit staff part of the healthcare team? ( Regulations 1989)HSE vs HIQA?
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Requirements under the Act and future implementation of the EU Standards
Patients have the right to be informed of the purposes to which their personal health information will be used
They have the right to give written consent for the use of the information for the purposes of clinical governance/audit
They have the right to withdraw consent at any time
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Requirements under the Act and future implementation of the EU Standards
EU Standards on Confidentiality and Privacy in Healthcare
http://www.eurosocap.org/eurosocap-standards.htm
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Requirements under the Act and future implementation of the EU Standards Recommendation 6: Provider Institutions must ensure
that the express consent of the patient is obtained for processes of clinical audit by staff not involved in the care of that patient.
Ethical requirements and legal obligations to protect patient confidentiality
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Patients vs staff? Service providers: sensitivities and
rights - E.g death rates by hospital and by e.g.
surgeon…. Needs to be carefully handled
Public right to know Informed choice Quality
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Impact of technologyexample Health Atlas Ireland Uses a number of databases already
available Cannot link individuals – eg RTA victim
cannot be tracked into the hospital admission and further
governance arrangements? Conceivable that where small numbers of a
condition reported together with geographic data that individuals might somehow be identifiable –rules for numbers in small areas
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Existing databases? HSE and other institutions – databases
with individual information about for instance , disability, specific disease registers etc etc
Variable IT systems Variable quality Ownership Access Probably variable compliance with best
practice unlinked
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Why link?
To allow individual to be tracked through the system
linking databases so the combinations of issues for people can be seen and understood
Identifying on a small area basis where people are coming from
Tracking services and patterns of health and disease
Audit, quality, service gaps, poor outcomes
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Recommendations National Patient Information Leaflets Evidence Based Guideline for all
healthcare professionals and clinical governance staff
Training and induction Monitor and Review effectiveness of
these approaches Develop Key Performance Indicators -
e.g number of complaints received under the Act.
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Issues for all our work Unique identifier Linking of databases Information governance Postcoding Balance between individual confidentiality
and need to be able to track and analyse services, patterns of health and illness.
What does public want us to know? What do they think /expect us to know? Ethics/research – biomed vs HSR- research
supports for all
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Future? Proposal for an identity management and
privacy protection framework Linking datasets- data protection and
governance- ?HIQA Surveys vs inclusion of data items
routinely?- working together for best value- CSO, ESRI, IPH etc
Cohort studies? Genetics- will add a whole new dimension Horizon scanning- new and emerging
technologies and interventions- may be put in place with limited research base
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Consent? ( example) To help educate our staff and students and to teach them how
to treat illnesses more effectively they may view your medical record. Your medical record may also be used for our quality controls and audits to help us to improve our services.
To improve our understanding of illnesses we also sometimes carry out research using your medical record. Any research carried out by the hospital is governed by the policies of the Ethics Committee. We also may provide data to other health agencies such as the National Cancer Registry in order to plan
for the health needs of patients nationally. How feasible is this in the hospital
environment? What about primary care setting?
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Other issues Ethics and Protocols: There needs to be clear
‘rules of engagement’ and there will need to be guidelines on issues such as permissions to take and use information. There should be explicit Confidentiality Agreements in place for all staff
Training and expert advice Right to Access: There should be a right to
access to some information and there may be a need for legally underpinned accessibility. Equally, access to other types of information may have to be restricted.
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Start of public debate? Public Perceptions of Biomedical Research - A
survey of the general population in Ireland, was conducted by a team led by Professor Hannah McGee 2005
public is generally aware of and committed to making a contribution to research and related activities in the healthcare system for their benefit and for the benefit of future patients.
ongoing dialogue to foster research as a core activity of, and for the greater good of, the Irish and wider general public.
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Summary HSE in process of transformation Legacy issues from former
organisational structures Opportunity for excellence in health
care Collaborative approach to issues Thanks for support from various
agencies including DPC over last year Thanks to all with whom I work & their
contributions