The James Lind Alliance Approach to Priority Setting for Prostate Cancer Research: An Integrative Methodology Based on Patient and Clinician Participation

Lophatananon et al. (2011) full text summary PDF

For which topic were research priorities identified?

prostate cancer

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

Research in many fields of medical investigation is principally researcher and response led. The medical industry is advancing in both treatments and technologies, but the ideas and views of both patients and clinicians are often forgotten, even though these groups clearly have a shared interest in research. Patients themselves are becoming increasingly familiar with research, particularly through the internet, and with their direct experience of disease they should be an important voice when identifying research priorities. There exist uncertainties that surround the treatment of prostate cancer, the major male cancer which kills over 10.000 men in the UK every year.

What was the objective?

to identify patient/carer and clinicians' shared priorities for research into the treatment of specific health problems, in this case prostate cancer

What was the outcome?

a ranking list of 11 research questions

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

JLA method

How were the priorities for research identified exactly?

Step 1: setting up PSP: steering group established, stakeholders and partner organizations identified. Step 2: gathering uncertainties: survey asking participants to submit unanswered questions about prostate cancer, in parallel literature review, in total 391 uncertainties collected. Step 3: data processing: raw questions categorized and refined into collated indicative questions, check against literature, resulting in 134 indicative questions. Step 4: interim ranking: list of 134 unanswered questions under 32 broad headings, partners asked to look at all 134 submitted uncertainties, to select their top ten, and to rank those ten according to importance, top 30 questions moved forward. Step 5: final prioritization: workshop: small group discussions and small group ranking, second round of discussions and rankings, consensus on top 10

Which stakeholders took part?

Patients, carers, clinicians. Survey: 6 representatives of clinicians, 32 representatives of patients and 2 researchers.

How were stakeholders recruited?

Members of the partnership were identified through patient and clinician networks and organizations.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of members of the JLA, Prostate Action, the PCSF and the Prostate Cancer Charity (PCC). The members agreed on the methodology and were involved in data processing.