Health and Epidemiology at Hunter Research
-
Upload
hunter-research-foundation-hrf -
Category
Healthcare
-
view
137 -
download
0
Transcript of Health and Epidemiology at Hunter Research
PARTNERING FOR RESEARCH SUCCESS
HRF and Cancer Institute NSW-Partnering for Research Success
Shanthi Ramanathan and Jenny Williams 19 August 2014
PARTNERING FOR RESEARCH SUCCESS
Who we are
HRF works in partnership with clients to deliver high-quality, tailored research solutions, to provide insights that guide a better future.
PARTNERING FOR RESEARCH SUCCESS
Who we are Organisational structure
CEO
DIRECTOR OF RESEARCH
RESEARCH & RESEARCH SUPPORTSocial, health, economics. Statistics, programming
SURVEY RESEARCH STAFF
SURVEY RESEARCH
SUPERVISOR
SURVEY RESEARCH STAFF
MARKETING / ADMINISTRATION
Public Relations, Marketing and Sponsorship
MANAGEMENT SYSTEMS / ITManagement SystemsPayroll / Maintenance
IT & Software Support
HTS MANAGER
PARTNERING FOR RESEARCH SUCCESS
Who we areResearch Team
Dr Brent Jenkins Dr Clare Hogue David Shellard Jenny Williams
ShanthiRamanathan
Russ Redford Vanessa Sewell Dr Alan Rai
Ruth McLeod
Anthea Bill
PARTNERING FOR RESEARCH SUCCESS
What we do Research Services
Phone surveys (CATI) Facilitation – focus groups / workshops
Desktop research -literature reviews
In-depth interviewing
Statistical and qualitative analysis
Face-to-face (Paper & CAPI)
Online surveys (CAWI)
Paper-based surveys Reporting
Publication, ethics, study design
PARTNERING FOR RESEARCH SUCCESS
What we do Study Designs
Cross sectional studies Incomplete block designs
Complete block designs
Longitudinal studies
Randomised control trials
Case control studies
Discrete choice experiments
Costing studies
Cost-benefit analysis
PARTNERING FOR RESEARCH SUCCESS
A taste of what we do
• Epidemiological study on Follicular Lymphoma• Paper‐based lifetime calendar (client)• Telephone survey of diagnosed patients from
Cancer Registry (HRF)• Interviews booked by client• Sample from NSW and Victoria• Examine risk factors for follicular lymphoma• Completed 408 interviews, 98% response rate• Average interview length time: 45 minutes
PRINCE OF WALES CLINICAL SCHOOL, UNSW KEY FEATURES
• Complexity of the CATI program which required detailed information about many aspects of diet, sun exposure, early childhood details, other health rick behaviours
• Long interviews, some over an hour long- required skilled and patient interviewers
LEAF
PARTNERING FOR RESEARCH SUCCESS
A taste of what we do
PRINCESS ALEXANDRIA HOSP. (QLD) PSYCHO‐ONCOLOGY CO‐OPERATIVE RESEARCH GROUP (USYD), TROG, AUSTRALIAN LUNG CANCER TRIALS GROUP
PLUNG
• Telephone survey 130 lung cancer patients who do not qualify for the gold standard of radical therapy
• Discrete Choice Experiment ‐ how much improvement in QOL is necessary to make the inconvenience of each extra day of treatment worthwhile?
• Booklets of hypothetical scenarios provided to patients
• CATI interview reflects order of scenarios in booklets
Rapid turnaround
Multi-site
study
Each interview is
uniqueVery slow
uptake
PARTNERING FOR RESEARCH SUCCESS
A taste of what we do
• Information about asbestos exposure collected from consenting patients
• Postal questionnaire (client) and phone interview (HRF)
• Commenced in 2011 and still ongoing • Data collected on OccIDEAS – specialised
online data collection tool with job specific modules
• Data is transferred directly to the client
MESO
AUSTRALIAN MESOTHELIOMA REGISTRY, CANCER INSTITUTE NSW
UNIQUE FEATURES
• Working with multiple partners –CINSW, MonCOEH and Data Scientist who developed OccIDEAS.
• Timeliness- Short timeframe to complete interviews
• Different CATI software for our interviewers
• Some non-English speaking interviews using a translator
• Frail patients requiring sensitivity
PARTNERING FOR RESEARCH SUCCESS
A taste of what we do
• Multi‐mode: mail & online options• National survey of GPs and gynaecologists• 1,402 completed GPs surveys‐ 45% RR, • 404 gynaecologist surveys‐ 77% RR• Randomised incomplete block design• Each survey unique• Analysis ‐ determine key predictors for
referral for 4 cancers: endometrial, vulval, cervical and ovarian
• Full report written by HRF• Results published in MJA and presented
at COSA
NAT CENTRE GYNAECOLOGICAL CANCER, CANCER AUSTRALIA
GP/GY NATIONAL SURVEY
KEY FEATURES
• Partnership with Adelaide Uniand UniSA.
• Ethics and SCH approval
• Use of vignettes and unique survey for each person
• Sample stratified by metro/rural
• Complex samples to account for clustering
• Logistic regression
PARTNERING FOR RESEARCH SUCCESS
A taste of what we do
• Costing study for telepad project• Compared cost of providing paediatric
palliative care services utilising telehealth versus traditional methods
• Rural/regional patients• Developed an economic model for costing the
services• Model reflected variance in patient journeys
and assumptions that underpinned the costing
• Sensitivity analysis by distance from hospital• Data used to inform funding decisions
TELEPAD
KALEIDOSCOPE, JOHN HUNTER CHILDRENS’ HOSPITAL
KEY FEATURES
Worked very closely with paediatric team and available de-identified patient data to map patient journeys that would reflect typical pathways through the service
PARTNERING FOR RESEARCH SUCCESS
A taste of what we do
• In depth telephone interviews • 22 recent cancer survivors• Researcher conducted• Explore experience of treatment and
recovery for rural patients• Interviews taped, fully transcribed and
coded• Report produced• Helped inform development of
– a module to assist cancer survivors along the recovery pathway
– intervention strategies to address the perceived needs of newly diagnosed cancer patients
SURVIVOR
CENTRE FOR HEALTH RESEARCH & PSYCHO‐ONCOLOGY, UoN
KEY FEATURES
• In depth telephone interviews- difficult to keep patient engaged
• Triggered painful memories, anger, helplessness…handled sensitively by researcher
• Independence
PARTNERING FOR RESEARCH SUCCESS
A taste of what we do
• Pre‐ testing and piloting of the NHS Cancer Patient Experience Survey for NSW
• Mixed methods – focus groups (2) , in‐depth phone interviews (5)
• Coverage of metro and regional patients• Aim‐ to ssess current understanding of
questions• Identify and recommend any necessary
amendments to the existing survey • Develop pilot methodology, including
recommendations for evaluation of pilot outcomes
PATIENT EXPERIENCE
CANCER INSTITUTE NSW
Focus is on development: survey design and study methodology rather then data and results
PARTNERING FOR RESEARCH SUCCESS
A taste of what we do
• Cross‐sectional telephone survey of women aged between 16 to 60 years
• 1,000 respondents nationwide• Use of RDD mobile sample to
supplement landlines (EWP sample)
• Aim: To assess knowledge, awareness and understanding about HPV vaccination, cervical cancer detection and prior experience with screening.
HPV
AUSTRALIAN RESEARCH CENTRE IN SEX, HEALTH AND SOCIETY, LATROBE UNI
The number of mobile only household in Australia is rising. Most recent estimates of MO households: 19% in the general population and 37% of 18-34 year olds.
Having a mobile strategy is now imperative for any community survey
TIP
PARTNERING FOR RESEARCH SUCCESS
A taste of what we do
• Telephone recruitment of suitable participants to test a low literacy bowel cancer decision aid
• 86 Sydney residents recruited• Complex CATI questionnaire to determine
eligibility: – aged between 55‐64 years– average risk of bowel cancer– low to moderate general and health literacy
• 45 minute face‐to‐face interview to test the readability of the bowel cancer decision‐aid materials
BOWEL CANCER DECISION AID
SCHOOL OF PUBLIC HEALTH, UNIVERSITY OF SYDNEY
UNIQUE FEATURE
HRF developed acustomised algorithm to assess levels of general and medical literacy
PARTNERING FOR RESEARCH SUCCESS
A taste of what we do
• Cost benefit study – longitudinal telephone survey
• Telemarketing approach to recruiting smokers into telephone counselling for smoking cessation.
• Baseline survey• Follow‐up surveys ‐ benefits
measured in terms of cessation rates at four, seven and 13 months after recruitment.
• Costs ‐measured primarily from the service provider’s perspective (i.e. Quitline Australia)
QUITSTAIR
POINT OF NOTE
Recruitment of small subgroups in society (e.g. smokers who are contemplating quitting) via a random sample of Households is a very time-consuming and costly exercise. Other avenues of narrowing down the sample frame should be explored.
PARTNERING FOR RESEARCH SUCCESS
A taste of what we do
• NSW Prostate Care and Outcomes Study• Telephone survey of prostate cancer patients
diagnosed between Sep 2000 and Sep 2002• 2,100 cases and 500 controls (matched by
age and postcode) recruited • Followed up annually for 5 years till 2007• Examined QOL after prostate cancer
diagnosis, PSA testing, coping styles, supportive care needs and prostate cancer management
• Recent grant proposal to do a 15 year follow‐up with surviving men
PCOS
KEY FEATURES
Longitudinal – 5 yearsBuilt a rapport with participants - attrition was very low (80% still remaining after 5 years).
CANCER COUNCIL NSW
PARTNERING FOR RESEARCH SUCCESS
Why partner with us?
Rigour
Independence
Customisation of services
Range of services
Track record
Vulnerable/difficult
populations
Partnership approach
Skills
Niche in
Cancer
FlexibleAgile
PARTNERING FOR RESEARCH SUCCESS
Why partner with us?
Surpluses from contract work
Regional Research Program
Delivering insights that move the Hunter forward
Learnings relevant to all regions in Australia
Strong regions = strongstate = strong nation
NSW Decade of decentralisation SME
Social procurement
Microcosm of Australia
PARTNERING FOR RESEARCH SUCCESS
Why we want to partner with you?
Opportunity to make a difference
Reputation
Prior positive
experienceAbility to influencepolicy and practice
Collaborative approach
Similarvalues
Focus on
cancer
QOL
PARTNERING FOR RESEARCH SUCCESS
In Summary
Clearer picture of the HRF, our capabilities and our track record
Great fit between CINSW and HRF
Working together successfully
Partnership ‐ aligns well with NSW Government priorities
Opportunity to do quality work TOGETHER that makes a difference
PARTNERING FOR RESEARCH SUCCESS
We invite you to:
Talk to us when thinking about a research studyPartner with us in your grant applicationsInclude us in your invitations to tender (closed tenders) Call us with questions
PARTNERING FOR RESEARCH SUCCESS
PARTNERING FOR RESEARCH SUCCESS &WORKING TOGETHER TO LESSEN THE IMPACT OF CANCER
PARTNERING FOR RESEARCH SUCCESS
A taste of what we do OTHER STUDIES
• National Drug and Alcohol Research Centre (NDARC), UNSW - RCT to reduce smoking in socio-economically disadvantaged groups
• La Trobe/UNSW - Australian Health and Relationships Study (2003 & 2013) – 20,000 participants
• La Trobe - Australian Longitudinal Health and Relationships Study – 5 years
(9,000 participants)
• DVA - Gulf War Veterans Mental Health Survey – CIDI –Psychological Assessment Tool
• Care Track Australia – UniSA, UNSW