Knowledge Synthesis: Insight in the Age of Data

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1 HELENE MARKHAM JONES Research Support Officer & PhD Research Student Knowledge Synthesis: Insight in the Age of Data United Lincolnshire Hospitals

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3 On This Day February 28 th 1953 Francis Crick & James Watson deduce double helix structure of DNA Declare they have discovered the secret of life Rosalind Franklin separately captures image of DNA helical shape using X-ray crystallography Maurice Wilkins (Rosalind s colleague) shows image to Watson Confirms Watson s & Crick s theoretical double helical model 1958 Rosalind Franklin died of ovarian cancer aged Watson, Crick & Wilkins receive Nobel Prize for Medicine or Physiology Rosalind Franklin did not award not given posthumously

4 Communicate, Collaborate & Consolidate ASPIRE Data Knowledge (Big Data), Health Informatics and Analytical Tools NHS/NIHR/Researchers capacity to improve research delivery/transform healthcare through; Open Access Research Data Top Strategic Priorities Maximisation of Research Evidence Increase use of IT for data Embracing Big Data & Health Informatics capture & storage research Predictive Analytics, Correlation Analysis needs to go paper-light need Integration of Clinical & Operational Data better data sharing between Investment in Technology & Data Scientists/Professionals hospital departments, different Digital & Data Transformation & Strategies hospitals & GPs Aggregated Data Sets & Interoperability Communicate - Communication is the golden thread which ensures that an organisation can work effectively. Collaborate UK-wide clinical trials create collaboration across centres and countries that are inspiring, effective and engaging. Consolidate Research is becoming much more integrated into clinical decisions.

5 Systematic Reviews, Research & Data Synthesis Systematic Review: A review of the evidence on a clearly formulated question that uses systematic and explicit methods to identify, evaluate and synthesise relevant primary research A scientific methodology that is reproducible and amenable to rigorous evaluation Data Synthesis: QUANT Statistically combine results several studies meta-analysis QUAL Narrative summary & synthesis of primary studies Resources: Research Synthesis: Synthesis of multiple qualitative studies can: Pull together data across different contexts Generate new theoretical or conceptual models Identify research gaps Provide evidence for the development, implementation and evaluation of health interventions Facilitate evidence-based health care & policy Resources:

6 Role of EDGE Integrated Platform Data Synthesis Systematic Review Study Hosting visibility clinicians & practitioners Open scope of systematic review conduct to wider group of researchers Data Synthesis & Integration reduce duplication Data trove Disease, Population, Volumes & Metrics, Study Design & Methodologies Protocol Complexity Analysis Visibility on Research Outcomes & Study Results Workload reduction across industry through integration of research platforms & data

7 DGE, Research & Data Integration Sample Portfolio Reviews & Analysis Strategy Global/National Studies for Cancer Analysis of Cancer Studies by Disease Site Analysis of Cancer Studies at Sample Site Systematic Review CATPIC - Cancer Protocols & Interventions Template attributes created for Study Phase, Design, Search Strategies etc. Meta-Analysis of all extractable EDGE Attributes Protocol Analysis Attribute Populated Systematic Review Reports from Attributes Data Analysis NVivo, SPSS & Power BI Unpublished Results & Conclusions in Personal Attributes

8 EFACCT Systematic Review - CATPIC CATPIC - Comparative Analysis of commercial & non-commercial Trial Protocols & interventions impacting Cancer clinical trial delivery in the NHS: A Systematic Review What are the variables within commercial and non-commercial study designs and interventions impacting cancer clinical trial delivery? Systematic review is supporting the primary research in EFACCT study involving research professionals & cancer patients Contributing to developing Grounded Theory

9 EFACCT Collaborative & democratic study Involves key stakeholders (cancer clinical trial patients & clinical research professionals) in service evaluation & defining research priorities 13 sites geographically diverse locations 10 LCRN Networks Representative sample - site types & scale QUAL & QUAN Mixed Methods Study Critical analysis of strategies, processes, technologies & stakeholder perceptions Data triangulation - 4 work packages Evidence Data, Systems & Person orientated

10 EFACCT TRACAT ASPIRE Study Analysis: Data synthesised 4 work streams Develop Grounded Theory Theoretical framework & TRACAT Descriptive statistics & thematic content analysis SPSS & NVivo Data Triangulation - Validity

11 EFACCT Delphi Pro Study Round 1 Round 1 Open Question Categories 1. Follow-Up Definition 2. Barriers & Burdens 3. Analysis of Complexity 4. Capacity Factors 5. Top 3 Strategic Priorities 6. Existing Effective Practice 7. Additional Delphi Considerations West Midlands 8% South West 8% South Coast 4% Scotland 8% North West 23% DELPHI PRO PANELISTS Yorkshire & Humberside 7% East Midlands 31% Greater London 11%

12 Delphi Pro Study Top Strategic Priorities Top Strategic Priorities We need a way of accurately assessing complexity to allocate resource, this needs to be future proof, validated & accurate Effective Practice Collaboration between departments and organisations working flexibly across specialities

13 EFACCT Delphi Pro Study Follow-Up Follow-Up Definition Any Stage Follow-up is the process of tracking, capturing & retaining patients and their data enrolled in clinical trials. It maintains regular contact with the patient to monitor their health status and collects cumulative therapeutic effects following active therapy. Follow-up can be seen as the data from baseline to the time when the trial is fully completed and closed. Follow-up can be weekly, monthly, annually or follow a clinical pathway, indeed any time up to the time of disease progression, where a patient s pathway may change, when the patient states they wish not to be included in further followup or the patient dies. Follow-Up Definition Post Treatment Follow-up is the protocol defined period of time in which a patient is monitored after having received a treatment on a clinical trial. This varies in length and complexity based upon the aims and objectives of the study.

14 EFACCT Delphi Pro Responses Barriers & Burdens Lack of collaboration between departments within hospital & with shared care organisations Additional Delphi Considerations We need to think nationally about how best to attract research to the UK. What makes us better? Why would US & European sponsors want to invest in us and how do we empower patients to ask about research? Capacity Being awarded the correct amount of time and Headspace to complete the required tasks Complexity Complex trials are as multifaceted as the patients they are trying to recruit. Complexity equals increased workload and increased individual needs

15 A S P I R E ASPIRE A Synthesised Platform of Integrated Research Evidence Thank you for your time #ASPIRE Start by doing what s necessary, then do what s possible and suddenly you are doing the impossible St Francis of Assisi.

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