Prioritising Informed Health Choices Key Concepts for those impacted by cancer: a protocol

Abstract

Background: Few areas of health have been as insidiously influenced by misinformation as cancer. Thus, interventions that can help people impacted by cancer reduce the extent to which they are victims of misinformation are necessary. The Informed Health Choices (IHC) initiative has developed Key Concepts that can be used in the development of interventions for evaluating the trustworthiness of claims about the effects of health treatments. We are developing an online education programme called Informed Health Choices-Cancer (IHC-C) based on the IHC Key Concepts. We will provide those impacted by cancer with the knowledge and skills necessary to think critically about the reliability of health information and claims and make informed choices. Methods: We will establish a steering group (SG) of 12 key stakeholders, including oncology specialists and academics. In addition, we will establish a patient and public involvement (PPI) panel of 20 people impacted by cancer. After training the members on the Key Concepts and the prioritisation process, we will conduct a two-round prioritisation process. In the first round, 12 SG members and four PPI panel members will prioritise Key Concepts for inclusion. In the second round, the remaining 16 PPI members will undertake the prioritisation based on the prioritised Key Concepts from the first round. Participants in both rounds will use a structured judgement form to rate the importance of the Key Concepts for inclusion in the online IHC-C programme. A consensus meeting will be held, where members will reach a consensus on the Key Concepts to be included and rank the order in which the prioritised Key Concepts will be addressed in the IHC-C programme. Conclusions: At the end of this process, we will identify which Key Concepts should be included and the order in which they should be addressed in the IHC-C programme.

Prioritising Key Concepts for informed health choices in cancer: An evidence-based online educational programme

“…After gathering detailed information from participants, the research team carefully reviewed it to determine the final list of eligible participants for the patient and carer participation group. This was based on the eligibility criteria outlined in the previously published protocol [ 14 ].…”

“…Trainings focused on the outline of the IHC-C programme and the purpose of prioritisation. Separate training sessions were held for the project group and patient and carer participants to accommodate their distinct perspectives, while the core content of the training sessions remained consistent [ 14 ].…”

“…We conducted two rounds of prioritisation to identify the most relevant KCs for people impacted by cancer. The prioritisation process used a structured, iterative development process [ 14 ] adapted from the protocol used by Oxman et al for lower secondary schools in East Africa [ 40 ].…”

“…However, there is a considerable risk of encountering harmful misinformation, especially that promoting unproven treatments [ 12 , 13 ]. Despite the unreliability of such misinformation, it reaches and impacts cancer patients worldwide [ 14 ]. Research has found that a third of the most popular articles shared on social media on the four most common cancers contained false, inaccurate, or misleading information [ 15 ].…”

“…In this current project, we aim to take steps to address this need through the creation of an online education programme entitled Informed Health Choices-Cancer (IHC-C), which is based on a set of 49 Informed Health Choices (IHC) Key Concepts (KCs) (see Appendix). The KCs provide principles for recognising the reliability of claims, comparisons, and making health choices [ 14 , 30 ]. They enable individuals to identify the presence of health claims, evaluate the reliability of the evidence behind the claims, and make well-informed choices when considering different options [ [31] , [32] , [33] ].…”