THE SEARCH PROJECT7 years on; learning and reflection

Sophie Clyne

January 2011

PROCESS OF SEARCHDesign

• It was agreed that although there was a lack of robust evidence regarding inequality in health for Aboriginal children, this was widely accepted and needed to be acknowledged and evidenced. A truly collaborative approach was indicated for gathering evidence

•Design considerations, discussion of stakeholders, leads, project aims clarified across organisations

• Initial meetings; 2004

Training Research

ers • 13 Aboriginal researchers initially trained.

• Recruitment aimed at Aboriginal population

• Recruitment through advert (approved by Aboriginal Medical Centre's) and word of mouth

• Small number of applicants for posts; 1-3 at each base. Many needed some encouragement to apply.

• Researchers started one week prior to study start date to give time for training and induction.

• Ages varied between 17 and mid 40's

• Initially retention of researchers was poor but this improved due to targeted recruitment and supportive infrastructure

Target Population

• Four ACCHO's recruited to the study within large regional centres. Study aimed at Aboriginal children up to age 17 who attend participating ACCHO. Parents/carers need to give permission to provide contact details for follow up and be over 16.

• The four sites were recommended by CRIAH, along with two others. The two that didn't particpate were not ready to take part when the study began but did express interest at getting involved later. This is still under consideration

Methods for Recruitmen

t

• Study is publicised at each ACCHO via community events, posters and leaflets

• Three Methods for recruitment:

• 1) Parents/carers approached by data collector within centre

• 2) Parents/carers are informed about study by GP or health worker when at appointment

• 3) In sites where its appropriate invitation letters are mailed out to families

• Families meeting inclusion data invited to participate and provided with info sheet by data collector. Consent forms signed, older children also given info sheet.

• A database has been compiled and it is possible to extract data from this to highlight trends in recruitment success regarding methods and timing.

Governance

•SEARCH Steering group composed of Study investigators, representatives of ACCHO's and Aoriginal Health and Medical Research Council.

•Governance procedure and reporting structure set.

•A core group of members for this steering group were all very committed to the project which resulted in high retention and attendance at board meetings.

Information

Gathering

•Baseline Assessments taken.

•SDQ Validation Study; focus groups, survey data, clinical interviews

•RCT of health broker intervention; diagnoses and GP care plan, intervention provided, review of management of Otitis Media.

•Resilience study; focus groups, in depth interviews

•Housing Feasibility Study; audit

•Cohort study; follow up including questionnaire and measures

•Cohort study; longitudinal- questionnaires and measures.

Analysis/ Results

•Building partnerships

•Effective methods for recruitment and continuity

•Continued increase of recruits; large numbers reached

•Collected comprehensive measures

•Produced novel data to be used in policy decisions; 9 papers using SEARCH data have been published

Dissemination

•BMC Public Health Paper

•SEARCH Promotion Material

•Websites of involved organisations

•Progress Reports publicised

•Non formal feedback to communities and centres

Translation to

Practice

•Papers published- 9; these all used the methodologies of SEARCH but not the data itself.

•Translation to policy and practice strategy and results

RECRUITMENT- TO BE POPULATED

Further steps Timeline of recruitment, including demographics to identify recruitment trends and triggers

Methods of recruitment

Number recruited via this method (total)

Researcher views on method

Any identifiable trends

Parents/carers are informed about study by GP or health worker when at appointment

Parents/carers approached by data collector within centreInvitation letters are mailed out to families

GOVERNANCE OF SEARCH

SEARCH Management Committee

SEARCH Operational

Team

SEARCH Steering Group

Due to the structure of the three meeting groups, there are individuals which sit across several groups. Several individuals sit on both the Operational Team and the Management Committee, which allows for a good communication pathway. Three members all sit on the Steering Committee in addition to the Management Committee, which again allows for improved communication and dissemination.

The SEARCH Steering Group shows clear commitment and prioritisation from individuals involved; very high attendance from leading investigators

COMMUNICATION AND DISSEMINATION STRATEGY

Objective Aimed at Tools Success Measures

Governing board members are knowledgeable and involved regarding SEARCHactivities

Board Members and Lead Investigators

Terms of Reference and engagement papers. Briefings from study leads, progress reports, updates

Attendance at Board meetings, papers sent on time.

AMC’s are engaged and committed to SEARCH study

AMS Staff SEARCH study plans, research investigators

AMC staff appropriately informed and engaged. ...

Aboriginal Health sector is informed and engaged with research activities for SEARCH

AMS’s, Aboriginal Community Involvement in research planning. Face to face meetings, forums for discussing project

Number of families involved, views of AMS staff

High number of families with continued involvement in study

Families and AMS’s Retention methods, recording of retention

Number of families involved

Increased recognition of unique Aboriginal health risk factors and prevalence of illness

Public, policy decision makers Media releases, publications, awards and events

Number of articles published, positive citations using study figures, media enquiries, collaborations with partners and organisations.

Aboriginal community recognises value of study and continuation

Aboriginal community and participating families

Word of mouth, supporting groups and individuals

Increased participation and retention in study

SEARCH data is used and recognised as valuable

Academic audiences, Aboriginal health services, government, health providers and services, organisations in other sectors such as housing and social

Progress reports completed timely and in user friendly formats. Partner websites, ease of access to data, publication of project findings, media releases, website search capacity, presentations

Number of publications, mentions of research, collaborations etc

Governments and strategic organisations are aware of study and research outcomes to improve Aboriginal health

Aboriginal health services, health providers, policy makers, government officials

Transfer plan development which involves relevant officials and operational roles.

Involvement of relevant sectors in planning and implementation of transfer plans.

OBSERVATIONS AND REFLECTIONS FROM SEARCH PROCESS AND PROJECT

Highly respected and regarded by all those involved Key to success has been relationships built through it; the trust and dedication

from individuals to the project. This was apparent in all those that the project was discussed with.

High prioritisation all the way through from board meetings and high presence at the Centres of SEARCH staff

Clear communication channels across the Sax and with all those involved out in the field

Areas of struggle initially: approach and retention of staff Areas of struggle now; continued funding, the continued prioritisation and buy in

from funding organisations Although I wasn’t able to speak to families who were involved in the study, I felt

that the researchers I spoke to had a good understanding of how the families felt and responded to involvement in the study. As the study gained credibility from the community, there was less anxiety about committing to the project or apprehension regarding what this involved. Cooperation improved following clear explanation of the benefits of the study to the family and child, in particular the promise of specialist services and consultant care appeared to be very important to families.

The study’s success relies a great deal on the dedication and interpersonal skills of the researchers and individuals leading the study; this factor shouldn’t be underestimated, and a robust system needs this element in future designs

CONTINUED

A key area of success has been the use of Aboriginal workers in the study, and the depth of appreciation and understanding they have had in regards to how the research be conducted, and how the community is actively involved

Following the difficulties with the project taking off initially, there was a shift in focus from a research point that was around ‘how to get data from Aboriginal groups’ to changing the approach of the study to encompass the indigenous world view. It took several years for this approach to be fully integrated into SEARCH. There was a shift in decision making and empowerment during this start up time.

The rules of engagement were developed and followed, with the four stages of inform, consult, involve and collaborate

The different sites involved in the study all have very different cultures, relationships and set ups. This is one of the strengths of the study as it allows ownership and some autonomy, thus reducing the ‘put upon’ effect that is often the failing point of many research studies.

High rates of continuation figures suggest the retention techniques of follow up regular calls and contact with the family are effective

NEXT STEPS

Linking up the sub studies to show their value and implications

Adjust recruitment methods to maximise future recruitment and resources according to highest success methods

Publicise widely why this has worked; not just in terms of cultural and community engagement but using health statistics and real costs saved through the project itself in terms of preventative savings

Targeting of remaining Aboriginal Medical Centres to come on board with SEARCH study

MY LEARNING

Importance of history, culture and collaboration in healthcare

The dedication of individuals on all levels of the project to ensure success

The importance of ‘soft’ skills The disparities that exist in Australia, and the

progress towards shifting these The role that organisations such as The Sax

play in the Healthcare System in Australia