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


Who we are

HRF works in partnership with clients to deliver high-quality, tailored research solutions, to provide insights that guide a better future.


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


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


Who we areInterviewing Team


Who we areInfrastructure


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


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


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



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



• 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



• 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



• 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



• 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



• 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



• 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



• 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



• 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.



• 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


Why partner with us?

Rigour

Independence

Customisation of services

Range of services

Track record

Vulnerable/difficult

populations

Partnership approach

Skills

Niche in

Cancer

FlexibleAgile


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


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


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


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 &WORKING TOGETHER TO LESSEN THE IMPACT OF CANCER


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

Healthcare

Health and Epidemiology at Hunter Research