Understanding the value of patient involvement is crucial to efforts to encourage patients and their representatives to participate in health technology assessment (HTA). This study sought to understand the extent of patient involvement in oncology single technology appraisals (STAs) by NICE, and the key issues that patients focus on.
STA committee papers for oncology indications submitted between April 2018 and April 2019 were reviewed to determine how many patient groups and nominated patient experts provided written comments as part of the initial evidence review. Comments were thematically analyzed to identify key issues for these stakeholders.
Understanding the value of patient involvement in HTA
Thirty-three STAs of oncology products were completed in 2018–19. Evidence for the initial review was submitted by patient groups and patient experts in 28 (85%) and 13 (40%) of these appraisals, respectively. In line with the submission form, the main issues addressed by patients were symptom/disease burden and the advantages of the new technology (both 82%), and the limitations of current treatment and the new technology (both 78%). In addition, two-thirds of submissions described the burden of disease on carers and over half outlined important treatment goals. Patients also expressed views on elements of the disease or treatment which were beyond those requested in the form, including new treatments bringing hope and the need for information and counselling. The majority of the comments following appraisal consultation document (ACD) publication related to concerns about the decision (67%).
This study demonstrated that patient groups are involved in the majority of oncology appraisals, and provided insights into a number of value domains important to patients/carers. However, the study is limited by the small sample size. Further research should evaluate how the additional elements of value identified by ISPOR align with those raised by patients/carers, which could help to ensure a continued advocacy of the patient voice in HTA.