Building a research agenda together: Involving patients and other stakeholders in defining research priorities

Transcription

1 Building a research agenda together: Involving patients and other stakeholders in defining research priorities Marcia Tummers, Michèle Bolscher, Gert Jan van der Wilt on behalf of the INTEGRATE-team Radboud Institute for Health Sciences, Department for Health Evidence Radboud university medical center, the Netherlands This project is co funded by the European Union under the Seventh Framework Programme Grant Agreement No )

2 Background Healthcare involves a variety of stakeholders Important to involve patients and other stakeholders in priority setting in healthcare 1 Different perspectives may raise different questions and concerns 1 Chalmers et al. Lancet 2014;383:156-65

3 AIM To develop and test a method for involving patients and other stakeholders in defining priorities, with a focus on social learning What do we mean by this? Collecting all wishes Prioritise wishes Developing a shared view on what is relevant and plausible Focus on social learning

4 Methods Case study: palliative care Individual face-to-face interviews with stakeholders Invited stakeholders: those who experience the consequences Lay stakeholders Professionals

5 Scoping is a process to indentify key issues of concern at an early stage in planning Why? Increase the relevance of research Indentify differences among stakeholders Create consensus on what is important

6 Scoping The analysis was based on reconstruction of interpretive frames, revealing Problem definitions Judgements of solutions Empirical and ethical background theories Normative preferences

7 Box 1: Questions used for scoping exercise: examples Problem What are key problems experienced or encountered by patients, their families, health care providers or health care managers in the care of patients for whom no curative treatment is available? Solution Background theory Which measures could be helpful in overcoming these problems, which measures would probably not be helpful, and why not? What are the main causes of the current situation, notably of system failures such as lack of continuity of care? Normative preferences What situation should be pursued, what values should be observed?

8 Process of the study 1. Identify key questions and concerns of stakeholders with respect to palliative care as part of their interpretive frames 2. Searched for answers by conducting a systematic review of the literature 3. Fed back the results to the participants, soliciting their views of the relevance and validity of the findings

9 Results Participants Patients General practitioners Palliative care specialists Chaplains Nurses

10 Scoping (step 1) Key issues and concerns revealed around three main themes 1. Transition from a curative to a palliative approach 2. Continuity of care 3. Meaning of life questions How can research help patients and their relatives to discover the meaning of life in the presence of an incurable disease

11 Literature search (step 2) Qualitative and quantitative studies Multiple interventions For example Life reviews Meaning-making interventions Music therapy No Abstract Available (81) Articles Identified by Search 2087 Screened for Title/Abstract 130 Title/Abstract Met Criteria Excluded (n=137) Duplicates not identified by endnote (96) No Access (41) Excluded (n= 1957) Not Article Format (31) T/A Didn t Meet Criteria (1926) o No spiritual outcome (421) o No empirical research (476) o Other (1029) 211 Screened for Full Text Excluded (n= 186) Not Article Format (3) No Access (33) Didn t Meet Criteria (150) o Not an intervention study (40) o Not PC (10) o No spiritual outcome (10) o Other (90) 25 Full Text Met Criteria

12 Feedback stakeholders (step 3) Key issues and concerns revealed around three main themes 1. Transition from a curative to a palliative approach 2. Continuity of care 3. Meaning of life questions How can research help patients and their relatives to discover the meaning of life in the presence of incurable disease

13 Feedback stakeholders Qualitative and quantitative studies Multiple interventions For example Life reviews Meaning-making interventions Music therapy No Abstract Available (81) Articles Identified by Search 2087 Screened for Title/Abstract 130 Title/Abstract Met Criteria Excluded (n=137) Duplicates not identified by endnote (96) No Access (41) Excluded (n= 1957) Not Article Format (31) T/A Didn t Meet Criteria (1926) o No spiritual outcome (421) o No empirical research (476) o Other (1029) 211 Screened for Full Text Excluded (n= 186) Not Article Format (3) No Access (33) Didn t Meet Criteria (150) o Not an intervention study (40) o Not PC (10) o No spiritual outcome (10) o Other (90) 25 Full Text Met Criteria

14 Conclusions This study explored, developed and tested a method to define research priorities Mismatch between available evidence and stakeholders concerns Challenging to develop and execute a research agenda that matched the questions and concerns of patients and stakeholders Reconstructing stakeholders interpretive frames and sharing the results among them, may be a means of starting a social learning process, resulting in more meaningful priorities of research