Dudley Louise, Gamble Carrol, Allam Alison, Bell Philip, Buck Deborah, Goodare Heather, Hanley Bec, Preston Jennifer, Walker Alison, Williamson Paula, Young Bridget
Department of Biostatistics, University of Liverpool, 1st floor Duncan Building, Daulby Street, Liverpool, L69 3GA, UK.
TwoCan Associates, 59 Wickham Hill, Hurstpierpoint, Hassocks, BN6 9NR, UK.
Trials. 2015 Apr 27;16:190. doi: 10.1186/s13063-015-0667-4.
Training in patient and public involvement (PPI) is recommended, yet little is known about what training is needed. We explored researchers' and PPI contributors' accounts of PPI activity and training to inform the design of PPI training for both parties.
We used semi-structured qualitative interviews with researchers (chief investigators and trial managers) and PPI contributors, accessed through a cohort of clinical trials, which had been funded between 2006 and 2010. An analysis of transcripts of audio-recorded interviews drew on the constant comparative method.
We interviewed 31 researchers and 17 PPI contributors from 28 trials. Most researchers could see some value in PPI training for researchers, although just under half had received such training themselves, and some had concerns about the purpose and evidence base for PPI training. PPI contributors were evenly split in their perceptions of whether researchers needed training in PPI. Few PPI contributors had themselves received training for their roles. Many informants across all groups felt that training PPI contributors was unnecessary because they already possessed the skills needed. Informants were also concerned that training would professionalise PPI contributors, limiting their ability to provide an authentic patient perspective. However, informants welcomed informal induction 'conversations' to help contributors understand their roles and support them in voicing their opinions. Informants believed that PPI contributors should be confident, motivated, intelligent, focussed on helping others and have relevant experience. Researchers looked for these qualities when selecting contributors, and spoke of how finding 'the right' contributor was more important than accessing 'the right' training.
While informants were broadly receptive to PPI training for researchers, they expressed considerable reluctance to training PPI contributors. Providers of training will need to address these reservations. Our findings point to the importance of reconsidering how training is conceptualised, designed and promoted and of providing flexible, learning opportunities in ways that flow from researchers' and contributors' needs and preferences. We also identify some areas of training content and the need for further consideration to be given to the selection of PPI contributors and models for implementing PPI to ensure clinical trials benefit from a diversity of patient perspectives.
推荐开展患者及公众参与（PPI）培训，但对于所需的培训内容知之甚少。我们探讨了研究人员和PPI参与者对PPI活动及培训的描述，以为双方的PPI培训设计提供参考。
我们通过一组2006年至2010年期间获得资助的临床试验，对研究人员（首席研究员和试验管理人员）和PPI参与者进行了半结构化定性访谈。采用持续比较法对录音访谈的文字记录进行分析。
我们采访了来自28项试验的31名研究人员和17名PPI参与者。大多数研究人员认为PPI培训对研究人员有一定价值，尽管不到一半的研究人员自己接受过此类培训，一些人对PPI培训的目的和证据基础表示担忧。PPI参与者对于研究人员是否需要PPI培训的看法不一。很少有PPI参与者接受过与自身角色相关的培训。所有组别的许多受访者都认为无需对PPI参与者进行培训，因为他们已经具备所需技能。受访者还担心培训会使PPI参与者职业化，限制他们提供真实患者视角的能力。然而，受访者欢迎进行非正式的入职“对话”，以帮助参与者了解自己的角色并支持他们表达意见。受访者认为PPI参与者应自信、积极、聪明、专注于帮助他人并具有相关经验。研究人员在选择参与者时会寻找这些特质，并表示找到“合适的”参与者比获得“合适的”培训更重要。
虽然受访者普遍接受对研究人员进行PPI培训，但他们对培训PPI参与者表示相当抵触。培训提供者需要解决这些疑虑。我们的研究结果表明，重新思考培训的概念化、设计和推广方式以及以符合研究人员和参与者需求及偏好的方式提供灵活的学习机会非常重要。我们还确定了一些培训内容领域，以及需要进一步考虑PPI参与者的选择和实施PPI的模式，以确保临床试验能从患者的多样视角中受益。
