Artikel
Priority Setting Partnership (PSP), pancreatic cancer, and colorectal cancer – bringing together clinicians, patients and carers to discuss research priorities
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Autoren
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Rosa Klotz
- Heidelberg University, Department for General-, Visceral- and Transplantation Surgery, Heidelberg, Germany; Heidelberg University, Study Center of the German Surgical Society (SDGC), Heidelberg, Germany
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Magdalena Holze
- Heidelberg University, Department for General-, Visceral- and Transplantation Surgery, Heidelberg, Germany; Heidelberg University, Study Center of the German Surgical Society (SDGC), Heidelberg, Germany
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Colette Doerr-Harim
- Heidelberg University, Study Center of the German Surgical Society (SDGC), Heidelberg, Germany
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Pascal Probst
- Heidelberg University, Department for General-, Visceral- and Transplantation Surgery, Heidelberg, Germany; Heidelberg University, Study Center of the German Surgical Society (SDGC), Heidelberg, Germany
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Toto Gronlund
- National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre, the James Lind Alliance, United Kingdom
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André Leopold Mihaljevic
- Heidelberg University, Department for General-, Visceral- and Transplantation Surgery, Heidelberg, Germany; Heidelberg University, Study Center of the German Surgical Society (SDGC), Heidelberg, Germany
| Veröffentlicht: | 23. Februar 2021 |
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Gliederung
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Background/research question: Colorectal cancer is the third and pancreatic cancer is the fourth leading cause of cancer deaths in Germany. Research projects on cancer are initiated by industry or scientists, usually without involving relevant stakeholders (treating physicians, patients, family members, nurses, etc.). However, there is a mismatch between available research evidence and the research preferences of consumers, i.e. patients and caregivers [1]. Consequently, patient involvement is essential to perform patient-centered clinical research.
Methods: Priority Setting Partnerships (PSPs) aim to involve patients, caregivers, doctors and other relevant stakeholders as equal partners to find the most urgent unanswered research question for a certain disease. This is achieved by a transparent 7-step process including survey, literature reviews and prioritizations. The PSP pancreatic cancer and the PSP colorectal cancer were initiated in Heidelberg in cooperation with the UK-based James Lind Alliance, a non-profit-making initiative. The aim is to separately identify and prioritize the top 10 open research questions / uncertainties on treatment of the two diseases.
Results: The PSP pancreatic cancer was performed from August 2017 to December 2019. In the first survey, 140 respondents (52% patients and carers) provided 519 research questions, termed uncertainties. A further 47 uncertainties were added after screening of the current guidelines. After removal of duplicates and questions beyond the scope of the PSP, the remaining suggestions were collated and verified as unanswered in the literature. The resulting 63 uncertainties were listed in the second survey for interim prioritization, completed, by 211 participants (51% patients and carers). From the 20 questions that received the most votes, ten priorities were agreed during the final consensus conference, which again involved all stakeholders.
The first survey of the PSP colorectal cancer was performed from Juli to October 2020 and the consecutive steps are currently ongoing.
Conclusion: The questions identified during the PSP pancreatic cancer warrant realized patient involvement and initiate patient-relevant research and research funding, thus improving the care of those most affected by pancreatic and colorectal cancer [2]. The presented PSPs establish the validated JLA method for the first time in Germany and they are the first PSPs on the subject of pancreatic cancer and colorectal cancer world-wide.
Competing interests: The authors declare that there is no conflict of interest.
References
- 1.
- Crowe S, Fenton M, Hall M, Cowan K, Chalmers I. Patients', clinicians' and the research communities' priorities for treatment research: there is an important mismatch. Res Involv Engagem. 2015 Jun 25;1:2. DOI: 10.1186/s40900-015-0003-x. Erratum in: Res Involv Engagem. 2015 Dec 23;1:14.
- 2.
- Klotz R, Doerr-Harim C, Ahmed A, Tjaden C, Tarpey M, Diener MK, Hackert T, Mihaljevic AL; Priority Setting Partnership Pancreatic Cancer. Top ten research priorities for pancreatic cancer therapy. Lancet Oncol. 2020 Jun;21(6):e295-e296. doi: 10.1016/S1470-2045(20)30179-0
