Cutting the Research Pie: A Value-Weighting Approach to Explore Perceptions About Psychosocial Research Priorities for Adults with Haematological Cancer

Paul et al. (2011) full text summary PDF

For which topic were research priorities identified?

haematological cancer

In which location was the research priority setting conducted?

Australia - Australia

Why was it conducted at all?

Despite the burden of illness associated with haematological cancers, little research is available about improving psychosocial outcomes for this group. Given scarce research funds, it is important to ensure that resources are used strategically for improving their psychosocial well-being.

What was the objective?

to identify the perceptions of professionals, patients and carers regarding prioritizing psychosocial research efforts

What was the outcome?

a ranking list of 13 research topics

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

consultation; survey

How were the priorities for research identified exactly?

Step 1: consultation: collecting research topics: advisory group developed list of potential priority areas for psychosocial research, resulting in list and definitions of population groups/steps in cancer journey, list and definitions of types of psychosocial research. Step 2: survey: using value-weighting scenario to allocate token funding to different areas of psychosocial research to show which research should be given priority, participants were asked: Imagine that the Leukaemia Foundation has asked you to decide which areas of psychosocial research should be funded. How would you allocate funding among these research areas so that they have the greatest impact on psychosocial outcomes for older adults diagnosed with blood cancer and their families? You can allocate all the funding to one area, or allocate different amounts of funding to different areas, each participant asked to allocate 100 points of funding

Which stakeholders took part?

Clinicians, researchers, psychosocial care providers and health professionals. Survey: 117 participants: 41 health professionals (4 clinicians, 23 nurses, 11 allied health workers, 3 other), 45 patients (26 were diagnosed with leukaemia, 6 with multiple myeloma, 10 with lymphoma and 7 with other forms of blood cancer) and 31 carers.

How were stakeholders recruited?

Stage 1: The Foundation nominated 13 individuals to represent a variety of stakeholders and viewpoints including consumers, clinicians, providers of psychosocial care, researchers and those involved in program management and advocacy. Stage 2: The advisory group nominated the names of Australian experts in their field to form the survey sample. This included clinicians, researchers, psychosocial care providers such as psychologists or social workers, and those involved in program development or delivery in the area of psychosocial care. The Foundation promoted the survey via its regular newsletter to patients and carers. Patients could include those at any stage of care. Carers could include any partners, family members or friends who had provided any form of care to a patient with haematological cancer.

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 an advisory board. The advisory board consisted of 13 members: leading researchers, healthcare professionals and patient representatives in the areas of blood cancer and psychosocial outcomes. The members were involved in all three Delphi rounds and nominated Australian experts for the survey.