Establishing a multistakeholder research agenda: lessons learned from a James Lind Alliance Partnership
OBJECTIVE: The James Lind Alliance (JLA) offers a method for better aligning health and care agenda's with the needs of patients, carers and clinicians by bringing them together in a Priority Setting Partnership (PSP). In this paper, we draw attention to crucial lessons learnt when establishing such a shared research agenda. KEY ARGUMENTS: Having specific strategies and plans in place for maximising dialogic processes in a PSP can help facilitate and maintain trust, innovation and equal inclusion. CONCLUSION: Eight lessons learnt have been formulated, based on our observations and reflections on the JLA PSP and our expertise on patient participation and participatory research.
Jongsma KR; Milota MM
BMJ Open
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjopen-2021-059006" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-059006</a>
Palliative care: more than one chance to get it right
Humans; Palliative Care; Great Britain; Critical Pathways; Health Priorities; Quality of Health Care
2014-07
Lancet
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/S0140-6736(14)61144-2" target="_blank" rel="noreferrer">10.1016/S0140-6736(14)61144-2</a>
Comparing research priorities for pediatric oncology from two panels of experts
Child; Humans; United States; Attitude of Health Personnel; Health Services Needs and Demand; Pediatric Nursing; Research Support; Oncologic Nursing; Congresses; Health Priorities; National Institutes of Health (U.S.)/organization & administration; Nursing Research/organization & administration; Professional Staff Committees/organization & administration
2005
Hare ML
Seminars In Oncology Nursing
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.soncn.2004.12.015" target="_blank" rel="noreferrer">10.1016/j.soncn.2004.12.015</a>
Rare essentials: drugs for rare diseases as essential medicines
Humans; decision making; Health Services Accessibility; Needs Assessment; Risk Assessment; Cost-Benefit Analysis; Organizational Policy; Public Health Administration; Policy Making; Rare Diseases; Organizational; Resource Allocation; Health Priorities; Drugs; World Health Organization; Essential; Orphan Drug Production; Social Justice
Since 1977, the WHO Model List of Essential Medicines (EML), published by WHO, has provided advice for Member States that struggle to decide which pharmaceutical technologies should be provided to patients within their public health systems. Originating from outside WHO, an incentive system has been put in place by various governments for the development of medicines for rare diseases ("orphan drugs"). With progress in pharmaceutical research (e.g. drugs targeted for narrower indications), these medicines will feature more often on future public health agendas. However, when current definitions for selecting essential medicines are applied strictly, orphan drugs cannot be part of the WHO Essential Medicines Programme, creating the risk that WHO may lose touch with this field. In our opinion WHO should explicitly include orphan drugs in its policy sphere by composing a complementary Orphan Medicines Model List as an addition to the EML. This complementary list of "rare essentials" could aid policy-makers and patients in, for example, emerging countries to improve access to these drugs and stimulate relevant policies. Furthermore, inconsistencies in the current EML with regard to medicines for rare diseases can be resolved. In this paper we propose selection criteria for an Orphan Medicines Model List that could form a departure point for future work towards an extensive WHO Orphan Medicines Programme.
2006-09
Stolk P; Willemen Marjolein JC; Leufkens HGM
Bulletin Of The World Health Organization
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.2471/blt.06.031518" target="_blank" rel="noreferrer">10.2471/blt.06.031518</a>
Identifying cancer nursing research priorities using the Delphi technique
Female; Humans; Male; Adult; Middle Aged; Delphi Technique; Northern Ireland; Health Priorities; Nursing Research/organization & administration; Oncologic Nursing/organization & administration
BACKGROUND: Nursing research is an integral component of improving the care of people with cancer. However, for research to be successfully integrated and applied to practice, ownership and identification must come from those in practice. The need for local and national strategies for cancer nursing research and the importance of establishing priorities for cancer nursing research have been repeatedly acknowledged. STUDY AIM: The aim of the study was to facilitate a strategic approach to cancer nursing research by identifying the research priorities of cancer nurses. RESEARCH METHOD: A three-round Delphi survey was administered to nurses (n = 112) attending a cancer nursing research conference in Northern Ireland. Participants were asked to identify five research questions that they considered a high priority for cancer nursing. A response rate of 54% (60 delegates) was obtained for round one and this generated 117 statements. These statements were content analysed. Two subsequent quantitative rounds followed this. RESULTS: The top priority areas identified were psychosocial issues, for example communication and information needs; professional issues relating to nurse burnout, stress and nurse-led care; and context of care issues including continuity of care. LIMITATIONS: A potential limitation of the study is the use of conference delegates. However, it is argued that these are the people we wanted to target as they could be considered as experts who already had an interest and clinical background in both cancer research and practice. CONCLUSION: These priorities have helped to provide both direction and focus for the development of a cancer nursing research strategy for Northern Ireland. It is recommended that future research questions should be focused around the highest ranked priorities.
2003
Mcilfatrick SJ; Keeney S
Journal Of Advanced Nursing
2003
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1046/j.1365-2648.2003.02666.x" target="_blank" rel="noreferrer">10.1046/j.1365-2648.2003.02666.x</a>
The WHO objectives for palliative care: to what extent are we achieving them?
Professional-Family Relations; Health Services Research; Outcome Assessment (Health Care); Organizational Objectives; Holistic Health; Non-U.S. Gov't; Pastoral Care; social support; Human; Support; Health Priorities; Terminal Care/methods; Hospices/standards; World Health Organization; Palliative Care/standards
This paper examines recent research in palliative care in the light of the guiding principles set out by the World Health Organization. It outlines the gaps in the literature and suggests priorities for future research. Areas of unmet need are documented and it is argued that research comparing outcomes across care settings and relating particular care practices to outcome measures would help to set care targets. Further definition of the expected outcomes of psychological and spiritual care, as well as care for carers, is recommended. Available measures are reviewed and suggestions made for the development of additional measures. Finally, some key methodological problems are discussed, including making cross-setting comparisons, identifying appropriate outcome measures, prioritizing patients' own identification of outcomes, using different methodologies as death approaches, and combining different perspectives offered by patients, lay carers and professional carers. The role of qualitative data as an indicator of rating scale validity is discussed in this context.
1995
Johnston G; Abraham C
Palliative Medicine
1995
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article