a Survivorship Unit , Danish Cancer Society Research Center , Copenhagen , Denmark.
b National Institute of Public Health , University of Southern Denmark , Copenhagen , Denmark.
Acta Oncol. 2019 May;58(5):634-641. doi: 10.1080/0284186X.2019.1566776. Epub 2019 Feb 6.
Patient and public involvement (PPI) is increasingly becoming a requirement in the effort to improve the relevance and quality of healthcare research. We examined how involving patients with lower education levels affected PPI in the development of the MyHealth randomized clinical trial of breast cancer follow-up from the perspectives of the patients and professionals. Eight women who had completed breast cancer treatment, four with fewer than 10 years of education, were recruited as members of a patient panel advising researchers in the development of the trial. We carried out individual and focus group interviews with panel members and recruiting nurses between April and September 2016. Researcher observations and changes made based on panel feedback were also documented. Patients were asked to evaluate the process according to a PPI theoretical framework with four dimensions: (i) ways of involvement, (ii) research vs. patient concerns, (iii) strength of the patient's voice, and (iv) degree of change. A combination of inductive and deductive thematic analysis was conducted whereby emerging themes were organized using the above framework. All patient contributors reported high satisfaction with being involved and PPI improved trial materials and recruitment strategy. However, contradictory perspectives between lay and expert approaches to research led to dilemmas not related to educational background. Patients were often more concerned with unmet needs after cancer than with research, and the scientific hierarchy made it difficult for researchers to include the patient perspective if it challenged research requirements. Nurses also faced ethical dilemmas when recruiting patients as PPI contributors. Our findings challenged the assumption that PPI automatically leads to a broad range of patient perspectives that can directly improve research relevance and quality. This highlights the need for more research and better guidance on the use of PPI in research.
患者和公众参与（PPI）越来越成为提高医疗保健研究相关性和质量的要求。我们从患者和专业人员的角度研究了让教育程度较低的患者参与对乳腺癌随访的 MyHealth 随机临床试验的 PPI 开发的影响。招募了 8 名完成乳腺癌治疗的女性作为患者小组的成员，其中 4 名的受教育程度不足 10 年，他们作为顾问参与研究人员进行试验开发。我们在 2016 年 4 月至 9 月期间对小组成员和招募护士进行了个人和焦点小组访谈。还记录了研究人员的观察结果以及根据小组反馈所做的更改。根据 PPI 的四个维度（i）参与方式、（ii）研究与患者关注点、（iii）患者意见的力度和（iv）变化程度，要求患者根据理论框架对该过程进行评估。采用归纳和演绎主题分析相结合的方法，根据上述框架组织出现的主题。所有患者参与者都对参与感到非常满意，并且 PPI 改善了试验材料和招募策略。然而，非专业人员和专家对研究的方法之间存在矛盾观点，导致出现了与教育背景无关的困境。患者通常更关心癌症治疗后的未满足需求，而不是研究，而科学层次结构使得研究人员如果提出挑战研究要求的患者观点，就很难将其纳入。护士在招募患者作为 PPI 参与者时也面临着道德困境。我们的研究结果挑战了这样一种假设，即 PPI 自动导致广泛的患者观点，可以直接提高研究的相关性和质量。这凸显了在研究中使用 PPI 方面进行更多研究和更好指导的必要性。
