Patientinddragelse i forskning. Lars Henrik Jensen Overlæge, ph.d., lektor

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1 Patientinddragelse i forskning Lars Henrik Jensen Overlæge, ph.d., lektor

2 BMC Health Services Research 2014, 14: studies that described a spectrum of engagement Engagement was feasible in most settings Most commonly done in the beginning of research (agenda setting and protocol development) No comparative analytic studies to recommend a particular method Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes Challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement Conclusions: Patient engagement in healthcare research is likely feasible in many settings Engagement comes at a cost and can become tokenistic Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.

3 and JAMA. 2015;314(21): DEVELOPING RESEARCH QUESTIONS Defining the most important potentially answerable research question is perhaps the most difficult task in clinical research. Working groups comprise people with a strong interest in the question: patients with the condition and their caregivers clinician experts researchers payers life sciences industry

4 ENGAGING PATIENTS AND OTHER STAKEHOLDERS IN MERIT REVIEW Review applications for research funding E.g. one patient, one other stakeholder, and 2 or 3 scientists provide in-depth written reviews and score each application. Standard New technical merit evidence gaps the burden of the condition relevance of the research to patients proposed strategy for engaging key stakeholders in planning, conducting, and reporting the research likelihood that the proposed study could change practice and improve health care and outcomes. Unanswered questions include how to balance the perspectives of stakeholder and scientist reviewers the importance of representing perspectives of all stakeholders in each review panel whether the process preserves scientific rigor Strongest predictors of final overall scores across all reviewers are the scientists preliminary scores for technical merit all reviewers preliminary scores on the potential to improve health care and outcomes and JAMA. 2015;314(21):

5 and JAMA. 2015;314(21): ENGAGING STAKEHOLDERS IN THE RESEARCH PROCESS Engage patients and other stakeholders or their organizations throughout study planning conduct analysis dissemination Engagement has already resulted in meaningful changes to studies identifying or refining questions selecting the study design choosing interventions, comparators, and outcomes Difficulties establishing relationships with stakeholders especially under the time pressure of writing a proposal what is engagement? finding the right stakeholder partners

6 Eksempel Analcancer Ingen nye mere effektive behandlinger Mere skånsom? Balance mellem effekt og bivirkninger Nu bestemmer lægen og fysikeren hvilke organer der skal skånes Spørg patienten!

7 Hvilken stråledosis vil du have? Provokere til involvering (patient+læge) Indsamle data for rektum, vagina, blære, knogler (dosis, bivirkninger) Næste protokol: vælge hvad der skal skånes.

8 Patientinvolvering i praksis Patient med i protokolgruppen Gennemlæst protokol Specielt patientinformation Kontakt til Patient- og Pårørenderådet

9 Yes

10 NO

11 Eksempel, opslag fra KB

12

13 Forskningsrådet Patient Pårørende

14 Lancet. Vol 374, No. 9683, p86 89, 4 July 2009

15 Patientinddragelse Kan være en genvej til at sikre Relevante forskningsspørgsmål Forståelig protokol Forskningen kan forklares Midler Resultaterne kan publiceres = en god ph.d.