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Finding and generating evidence in
palliative care: CareSearch’s role
Jennifer Tieman, CareSearch Director




ANZSPM 2010
Knowledge needs in palliative care
•   Population health considerations
•   Symptom and care issues
•   Service models and care settings
•   Professional/Methods of working
•   Family as unit of care
•   Care gaps, needed evidence
•   Technical and process skills
•   Progressing palliative care
Is there an evidence base?
Growth in palliative care literature
18000
16000
14000
12000
10000
 8000
 6000
 4000
 2000
   0
        1981-1985               1991-1995                 2001-2005

                Pall Care Citations   Pall Care Clinical Trials
Material not on Medline

20000

15000

10000

5000

   0
        1961-1965                1981-2001                2001-2005

            Medline   CINAHL Deduped   EMBASE Deduped   PsycINFO
Increase in journals and citations

8,000
7,000
6,000
5,000
4,000
3,000
2,000
1,000
    0
        1995                2000                      2005

               No. of journals     No. of citations
Increase in journal with regular content

              No of journals with 10 more citations per year

140
120
100
 80
 60
 40
 20
  0
       1995                          2000                      2005
Conversion rates: conference to journal
      120


      100


       80


       60


       40


       20


        0
            1988 1990 1991 1993 1994 1995 1996 1997 1998 1999
                     Unpublished abstracts   Published abstracts
Palliative care: Evidence considerations
 • Nature of evidence base needed
   – Complex, referral based, comorbidity,
     multidisciplinary
 • Best available evidence
   – Strength of the evidence
   – Generalisability, applicability
 • Expanding, not comprehensive
   – Identifying gaps
Palliative care: Evidence retrieval

• Growing, evolving, evidence base
• Multiple disciplines doing research
• Complex search basis
  – Many constructs
• Not all in one place
Palliative care: Evidence generation
• Sample size concerns
    – Multisite studies
•   Clinical researchers, skill development
•   Project/trial management infrastructure
•   Priority topics for research
•   Research funding needs
Palliative care: Evidence use
• Use by:
  – Health professionals, Services and
    organisations, Consumers, Discipline or
    profession, System
• Barriers
  – Awareness
  – Efficiency, relevance, quality
  – Interest in, commitment to
What is CareSearch’s role in the
palliative care evidence cycle?

 •Generating,
 •Finding,
 •Encouraging use
What is CareSearch?
• Funded by the Australian Government as part
  of National Palliative Care Program

    …provide a one stop shop of information and
    practical resources that serves the needs of all
    providing palliative care or affected by palliative
    care…supporting the development of evidence,
    disseminating information that will support the
    translation of this evidence into practice and
    prevent duplication of effort around Australia.
More than just a website




                          Content pages:
                      Topics for specific users




 News and updates
CareSearch: Generating evidence
• CareSearch research
• Research Resources
  – Conducting research pages
  – Finding grants
• RDMS
  – Online data management
• Professional Connect
CareSearch Research Areas
• Filter development
  – Palliative Care Filter
  – Heart Failure Filter
• Knowledge translation in online environment
  – eHealth literacy
  – Barriers to web use
Filter development: From this…
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=search&db=pubmed&t
   erm=(advance+care+planning[mh]+OR+attitude+to+death[mh]+O
   R+bereavement[mh]+OR+terminal+care[mh]+OR+hospices[mh]+
   OR+life+support+care[mh]+OR+palliative+care[mh]+OR+terminall
   y+ill[mh]+OR+death[mh:noexp]+OR+palliat*[Text+Word]+OR+hos
   pice*[Text+Word]+OR+terminal+care[Text+Word]+OR+1049-
   9091[journal]+OR+1472-684X[journal]+OR+1357-
   6321[journal]+OR+1536-0539[journal]+OR+0825-
   8597[journal]+OR+1557-7740[journal]+OR+1552-
   4264[journal]+OR+1478-9523[journal]+OR+1477-
   030X[journal]+OR+0749-1565[journal]+OR+0742-
   969X[journal]+OR+1544-6794[journal]+OR+0941-
   4355[journal]+OR+1873-6513[journal]+OR+0145-
   7624[journal]+OR+1091-7683[journal]+OR+0030-
   2228[journal])+AND+english[lang]
To this……

Run the palliative care filter now
To this……
Research Data Management System
• Online survey system allowing data entry from
  multiple sites anywhere in the world
• Web and print version compatible
• Variable rights and security roles
• In built data analysis tool with filters, graph,
  percentages, tables, etc
• Capacity to export data to programs
  such as Excel, SPSS
• Audit trails and email alerts
Contributes to evidence generation: Current examples
1. Multisite clinical trials (e.g. PaCCSC)
2. Service and organisation audits and surveys (e.g. PCQ consumer survey)
3. National Standards Assessment Program self assessment
Professional Connect
• Forums for communication and exchange
  – Private, registered, open
  – Registered pages for project/research shared
    resources
  – Shared project tools
     • Calendar, polls, alerts
• Examples of current user groups
  – PaCCSC
  – Victorian Nurse Practitioner Project
CareSearch: Finding evidence

•   Evidence Summaries
•   PubMed Topic Searches
•   Repository of hard-to-find evidence
•   CareSearch Review Collection
Clinical Practice: Evidence Summaries
 • Clinical Practice pages
   – Based on review of systematic reviews
   – 17 clinical pages
   – Related PubMed Topic Search
   – Quality and currency processes
 • Specific Populations pages
Finding Evidence section
• How-to guide on finding evidence
  – Sources and databases
  – How to create searches
  – Downloadable guide
• Evidence resources
  – PubMed Topic Searches
  – CareSearch Review Collection
  – CareSearch Grey Literature
PubMed Topic Searches
• Hyperlinks to topic based searches run in
  PubMed based on Palliative care filter
  – 60 topic searches
  – Immediate, real time
  – 5 options based on
     • Strength of evidence
     • Free full text only
     • Most recent
CareSearch Databases
• CareSearch Grey Literature
  –   Conference Abstracts
  –   Non-indexed Articles
  –   Theses
  –   Research Studies Register
  –   National Palliative Care Program
  –   Other Grey
• CareSearch Review Collection
CareSearch: Encouraging evidence use

 •   Audience specific content formats
 •   Continuing Professional Development
 •   Partnerships and integration
 •   Alerts and reminders
Audience Specific Content

• Audience specific content pages
  – Clinical Practice = evidence syntheses
  – Nurses hub/GP hub = practice interpreted
  – Patients/carers = consumer oriented
• Extensions to further resources
  – Quality appraised
Partnerships with Projects/Organisations
 • Quality Improvement
   – NSAP/PCOC
 • ANZSPM
   – Clinical Indicators
 • AGPN
   – Rural Palliative Care Program
 • PCNA
   – Nurses Hub
News and Updates

•   What’s new on CareSearch
•   What’s new in the community
•   What’s new in literature
•   @CARESEARCH
•   Alerts
Summary: Evidence and CareSearch
• Identifies systematically palliative care evidence
• Facilitates access to this evidence
• Uses evidence in designing and developing
  resources
• Contributes to the evidence base by
  researching specific project areas
• Supports those generating and using evidence
  by providing tools, resources, information
www.caresearch.com.au
CareSearch would like to thank the many people
who contribute their time and expertise to the project including
members of the National Advisory Group and the Knowledge
Network Management Group.
CareSearch is funded by the Australian Government
Department of Health and Ageing as part of the National
Palliative Care Program.
www.caresearch.com.au

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Finding and generating evidence in palliative care

  • 1. Finding and generating evidence in palliative care: CareSearch’s role Jennifer Tieman, CareSearch Director ANZSPM 2010
  • 2. Knowledge needs in palliative care • Population health considerations • Symptom and care issues • Service models and care settings • Professional/Methods of working • Family as unit of care • Care gaps, needed evidence • Technical and process skills • Progressing palliative care
  • 3. Is there an evidence base?
  • 4. Growth in palliative care literature 18000 16000 14000 12000 10000 8000 6000 4000 2000 0 1981-1985 1991-1995 2001-2005 Pall Care Citations Pall Care Clinical Trials
  • 5. Material not on Medline 20000 15000 10000 5000 0 1961-1965 1981-2001 2001-2005 Medline CINAHL Deduped EMBASE Deduped PsycINFO
  • 6. Increase in journals and citations 8,000 7,000 6,000 5,000 4,000 3,000 2,000 1,000 0 1995 2000 2005 No. of journals No. of citations
  • 7. Increase in journal with regular content No of journals with 10 more citations per year 140 120 100 80 60 40 20 0 1995 2000 2005
  • 8. Conversion rates: conference to journal 120 100 80 60 40 20 0 1988 1990 1991 1993 1994 1995 1996 1997 1998 1999 Unpublished abstracts Published abstracts
  • 9. Palliative care: Evidence considerations • Nature of evidence base needed – Complex, referral based, comorbidity, multidisciplinary • Best available evidence – Strength of the evidence – Generalisability, applicability • Expanding, not comprehensive – Identifying gaps
  • 10. Palliative care: Evidence retrieval • Growing, evolving, evidence base • Multiple disciplines doing research • Complex search basis – Many constructs • Not all in one place
  • 11. Palliative care: Evidence generation • Sample size concerns – Multisite studies • Clinical researchers, skill development • Project/trial management infrastructure • Priority topics for research • Research funding needs
  • 12. Palliative care: Evidence use • Use by: – Health professionals, Services and organisations, Consumers, Discipline or profession, System • Barriers – Awareness – Efficiency, relevance, quality – Interest in, commitment to
  • 13. What is CareSearch’s role in the palliative care evidence cycle? •Generating, •Finding, •Encouraging use
  • 14. What is CareSearch? • Funded by the Australian Government as part of National Palliative Care Program …provide a one stop shop of information and practical resources that serves the needs of all providing palliative care or affected by palliative care…supporting the development of evidence, disseminating information that will support the translation of this evidence into practice and prevent duplication of effort around Australia.
  • 15.
  • 16. More than just a website Content pages: Topics for specific users News and updates
  • 17. CareSearch: Generating evidence • CareSearch research • Research Resources – Conducting research pages – Finding grants • RDMS – Online data management • Professional Connect
  • 18. CareSearch Research Areas • Filter development – Palliative Care Filter – Heart Failure Filter • Knowledge translation in online environment – eHealth literacy – Barriers to web use
  • 19. Filter development: From this… http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=search&db=pubmed&t erm=(advance+care+planning[mh]+OR+attitude+to+death[mh]+O R+bereavement[mh]+OR+terminal+care[mh]+OR+hospices[mh]+ OR+life+support+care[mh]+OR+palliative+care[mh]+OR+terminall y+ill[mh]+OR+death[mh:noexp]+OR+palliat*[Text+Word]+OR+hos pice*[Text+Word]+OR+terminal+care[Text+Word]+OR+1049- 9091[journal]+OR+1472-684X[journal]+OR+1357- 6321[journal]+OR+1536-0539[journal]+OR+0825- 8597[journal]+OR+1557-7740[journal]+OR+1552- 4264[journal]+OR+1478-9523[journal]+OR+1477- 030X[journal]+OR+0749-1565[journal]+OR+0742- 969X[journal]+OR+1544-6794[journal]+OR+0941- 4355[journal]+OR+1873-6513[journal]+OR+0145- 7624[journal]+OR+1091-7683[journal]+OR+0030- 2228[journal])+AND+english[lang]
  • 20. To this…… Run the palliative care filter now
  • 22. Research Data Management System • Online survey system allowing data entry from multiple sites anywhere in the world • Web and print version compatible • Variable rights and security roles • In built data analysis tool with filters, graph, percentages, tables, etc • Capacity to export data to programs such as Excel, SPSS • Audit trails and email alerts
  • 23. Contributes to evidence generation: Current examples 1. Multisite clinical trials (e.g. PaCCSC) 2. Service and organisation audits and surveys (e.g. PCQ consumer survey) 3. National Standards Assessment Program self assessment
  • 24. Professional Connect • Forums for communication and exchange – Private, registered, open – Registered pages for project/research shared resources – Shared project tools • Calendar, polls, alerts • Examples of current user groups – PaCCSC – Victorian Nurse Practitioner Project
  • 25. CareSearch: Finding evidence • Evidence Summaries • PubMed Topic Searches • Repository of hard-to-find evidence • CareSearch Review Collection
  • 26. Clinical Practice: Evidence Summaries • Clinical Practice pages – Based on review of systematic reviews – 17 clinical pages – Related PubMed Topic Search – Quality and currency processes • Specific Populations pages
  • 27.
  • 28. Finding Evidence section • How-to guide on finding evidence – Sources and databases – How to create searches – Downloadable guide • Evidence resources – PubMed Topic Searches – CareSearch Review Collection – CareSearch Grey Literature
  • 29. PubMed Topic Searches • Hyperlinks to topic based searches run in PubMed based on Palliative care filter – 60 topic searches – Immediate, real time – 5 options based on • Strength of evidence • Free full text only • Most recent
  • 30. CareSearch Databases • CareSearch Grey Literature – Conference Abstracts – Non-indexed Articles – Theses – Research Studies Register – National Palliative Care Program – Other Grey • CareSearch Review Collection
  • 31. CareSearch: Encouraging evidence use • Audience specific content formats • Continuing Professional Development • Partnerships and integration • Alerts and reminders
  • 32. Audience Specific Content • Audience specific content pages – Clinical Practice = evidence syntheses – Nurses hub/GP hub = practice interpreted – Patients/carers = consumer oriented • Extensions to further resources – Quality appraised
  • 33. Partnerships with Projects/Organisations • Quality Improvement – NSAP/PCOC • ANZSPM – Clinical Indicators • AGPN – Rural Palliative Care Program • PCNA – Nurses Hub
  • 34. News and Updates • What’s new on CareSearch • What’s new in the community • What’s new in literature • @CARESEARCH • Alerts
  • 35. Summary: Evidence and CareSearch • Identifies systematically palliative care evidence • Facilitates access to this evidence • Uses evidence in designing and developing resources • Contributes to the evidence base by researching specific project areas • Supports those generating and using evidence by providing tools, resources, information
  • 37. CareSearch would like to thank the many people who contribute their time and expertise to the project including members of the National Advisory Group and the Knowledge Network Management Group. CareSearch is funded by the Australian Government Department of Health and Ageing as part of the National Palliative Care Program. www.caresearch.com.au