The success of any research initiative lies in having clear aims and objectives along with a detailed method and feasible timeline documented in a protocol or project plan. A PPIE initiative is no different. Careful planning and creation of a PPIE project plan sets your team up for success. The plan can also be used to apply for funding and approvals, explain the initiative to potential collaborators, and as a basis for a budget, manuscript and evaluation. A worksheet to come up with a Project Plan, with examples, can be found in Appendix C as an example.
Essential components of a project plan include:
● Title: A clear and succinct title outlining the focus of the initiative.
● Aim: An overarching purpose of the project outlining the action and desired outcome.
● Objectives: The specific, measurable, achievable, relevant and time-bound steps needed to achieve the aim.
● Team: The individuals contributing to the project and their responsibilities.
● Planned work: Detailed methods and planned activities to accomplish each objective.
● Expected outcomes: Outcomes and tangible outputs if the aim and objectives are achieved.
● Timeline: Important milestones and timeframe in which tasks are completed.
Top tips
● Tokenism: Avoiding tokenism, the symbolic inclusion of patients, is essential to avoid wasting the time and effort of patients. A key way to avoid tokenism is to plan for PPIE input where changes are realistic. Asking a PPIE group to review documents that will never be used or to provide feedback on a research project with a finalised protocol is pointless. The objectives and activities should focus on where your team has influence. For example, you will be able to change the consent form for a study led by your senior lead, whereas it is less likely you’ll be able to change the consent form template of the national ethics board.
● Solutions: Another way to avoid tokenism and ensure effective engagement is to identify problems that could be solved by PPIE. For example, a group can decide to focus on improving the consent processes for trials because of feedback from study coordinators and families that the trial information was not clear or communicated in a patient-centred manner. Input from a PPIE group can provide a clear solution to this problem.
● Low-hanging fruit: Early achievements are important to demonstrate value to PPIE members, leadership and collaborators, and will serve as motivation for coordinators. Thus, the first activity should be a straightforward task with a clear output. For example, reviewing and improving a patient-facing information sheet.
● Flexibility: The project plan will likely change over time. In fact, it is important that the plan is flexible enough to be guided by the priorities of your patient members. In the beginning, your members will benefit from having clear tasks to ease them into the work. Later, your objectives should be co-created with the patient members to ensure ownership and relevance. For example, when working on improving consent for trials, members could first review existing forms and later decide the format and content of new consent materials.
● Feedback: Once drafted, it is worthwhile getting critical feedback from others.