OPPORTUNITIES AND CHALLENGES IN PALLIATIVE CARE RESEARCH AN EAPC PERSPECTIVE

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1 OPPORTUNITIES AND CHALLENGES IN PALLIATIVE CARE RESEARCH AN EAPC PERSPECTIVE PROFESSOR PHILIP J LARKIN PROFESSOR OF CLINICAL NURSING [PALLIATIVE CARE] UNIVERSITY COLLEGE DUBLIN AND OUR LADY S HOSPICE AND CARE SERVICES PRESIDENT, EUROPEAN ASSOCIATION FOR PALLIATIVE CARE

2 OUTLINE OF THE PRESENTATION What do we mean by research evidence in palliative care? How best can we carry out palliative care research? Where are the gaps? Funding challenges Knowledge transfer, publication and dissemination How has the EAPC served the research agenda?

3 SOME USEFUL WORLD EVIDENCE TO DRAW ON

4 WHAT DO WE MEAN BY RESEARCH EVIDENCE? (IS THERE A LACK OF RESEARCH CULTURE IN PALLIATIVE CARE)?

5 HOW BEST CAN WE CARRY OUT PALLIATIVE CARE RESEARCH? Establishing the strength of evidence-base in a newly emerging field

6 WHERE ARE THE GAPS IN PALLIATIVE CARE RESEARCH?

7 HORIZON SCANNING FOR NEW AREAS OF EXPLORATION AND OPPORTUNITY Engaging the patient and carer voice Establishing palliative care in the chronic disease agenda Speciality areas paediatrics, rare disease, older person ( beyond dementia) Integration of systems and care pathways The economics of palliative care Rehabilitation Novel interventions Longitudinal multi-centre trials?

8 A CASE FOR COLLABORATION IMPROVES QUALITY AND DIVERSITY PROMOTES MUTUAL UNDERSTANDING OF VALUES AND BELIEFS PROMOTES SOCIAL CAPITAL IN THE FORM OF TRUST (ELLIOTT 2002) ENHANCES REFLEXIVITY (ALVESSON AND SKOLDBERG 2009)

9 THE VALUE OF CAPACITY BUILDING A COMMUNITY OF CRITICAL FRIENDS DIVERSE SHAPES, SIZES AND COLOURS EAPC EARLY RESEARCHER AWARD EAPC RESEARCH NETWORK SYMPOSIUM EAPC JUNIOR FORUM

10 BRINGING DIVERSITY TO THE TABLE

11 FUNDING WHO GETS THE MONEY AND WHY? Develop the research profile in small projects Don t put all your eggs in one basket Work with others Share the load

12 HOW HAS THE EAPC SERVED THE RESEARCH AGENDA?

13 WHAT SHOULD A COLLABORATION LOOK LIKE? THE ATOME PROJECT

14 CURRENT PROGRAMMES OF WORK ACTION A CLUSTER RANDOMIZED CONTROL TRIAL OF AN ADVANCE CARE PLAN FOR LUNG AND COLORECTAL CANCER PATIENTS PACE 6 COUNTRY COLLABORATION TO MAP AND COMPARE FORMAL AND INFORMAL PALLIATIVE CARE IN LONG-TERM CARE FACILITIES ON PATIENT AND FAMILY OUTCOMES InSup-C PATIENT CENTRED INTEGRATED PALLIATIVE CARE PATHWAYS IN ADVANCED CANCER AND CHRONIC DISEASE

15 EAPC PALLIATIVE CARE RESEARCH CENTRE (EPCRC. EPOS) European Palliative Care Symptom Study Multimodal Cancer Cachexia Intervention Study Intrathecal local opioid and anaesthetic for Cancer Pain RCT comparision of analgesic efficacy in moderate to severe pain? RCT of the Two-Step vs Three-Step Analgesic Ladder Nasal Fentanyl for patient controlled analgesia

16 ESTABLISHING CONNECTIONS Importance is not about size. It is about contribution Prof. Patrick Cunningham, Chief Scientific Advisor to the Government on Dublin s recognition as European City of Science 2012 RTE Morning Ireland 24 th November 2008

17 HOW DO WE ESTABLISH STRONGER EUROPEAN PALLIATIVE CARE RESEARCH?

18 THE ART OF SELF-REFLECTION What are your individual strengths and weaknesses? How would you describe your work ethic?

19 FOCUS FOCUS.FOCUS Articulate your patch? Where do you situate yourself within the discipline of palliative care? Can you share common values?

20 FIND YOUR PEOPLE PERSON (S) Who is the best person to deal with people engagement? Who is going to manage the conflicts which WILL arise? Managing exit strategies where necessary

21 FIT FOR PURPOSE FIT FOR PROGRAMME Is the team right for this call? Make an early decision. Do your homework about the call? Do your homework about the people? How do they publish? Is there clear evidence of previous collaboration and reciprocity?

22 WHERE IS YOUR PASSION? People are attracted to people who are passionate about their topic and deliver Enthusiasm encourages the pursuit of knowledge You cannot fake passion honesty and integrity are essential

23 OPENNESS TO CHANGE AND CHALLENGE Can you take critical appraisal of your ideas and transform them to constructive re-adjustments? Are you leading this bid or managing it? Surfing the ebb and flow of the research agenda

24 PERSISTENCE, PATIENCE AND PRAYER! Grant work is GRUNT work! Setting reasonable timelines and managing the fall-out when missed Tenacity without traits of OCD!

25 WHEN COLLABORATION WORKS WELL

26 SOME PARTICULAR CHALLENGES OF INTERNATIONAL COLLABORATION Language and meaning If report writing is in English, don t expect the Dutch to do it!! Account for timezones and timeframes IT is good..but sometimes you need eyeballs!

27 AND IF IT GOES WRONG? Diagnose dying Salvage the what is possible discard the rest Learn from the process Move on

28 SOME CONCLUDING THOUGHTS

29 PUBLISHING THE PAIN AND PROFIT! Take advice early AND PLAN AND AGREE AT THE OUTSET Target your submission. Involve others joint authorship Take on board the feedback - quickly LEARN from the process Just do it!

30 CAN COLLABORATIVE RESEARCH REALLY WORK? Yes, if it becomes part of the outcome not just the process Share research skills and methodologies be gracious Disseminate what you do TOGETHER Take time to hear the other voices

31 Thank you!