Patient and Public Involvement and Engagement (PPIE) is an essential, exciting and evolving practice in health research. Pakistan is leading the way in promoting high-quality PPIE with the creation of a national network and establishment of multiple initiatives up and down the country. This toolkit has synthesised the trials, tribulations and successes of a few PPIE pioneers into a practical guide that aims to ease the journey for others taking on the noble task of meaningfully engaging and involving patients, families and communities in research.
● Joy: First and foremost, remember to enjoy PPIE work! Meeting new people and building meaningful relationships is fulfilling. Running workshops is enjoyable and successful events provide a sense of success. Creative work associated with PPIE, whether social media marketing, video creation or developing infographics, can be deeply satisfying and stimulates different parts of your brain. Finally, seeing tangible impact on patient and public partners, and amplifying their voices provides purpose and pride.
● Power: Ultimately, PPIE work comes down to power. Engagement activities aim to shift the balance of power so that research is not just the domain of researchers, but co-created and co-led with those that research intends to serve; the public. Clinicians and investigators are used to being the ‘experts’ making all the decisions. Within PPIE, lived experience is recognised as a form of expertise. Patients are experts in living with a condition, families are experts in caring for their loved ones and members of a community are experts in how life works in a specific culture or society. All these forms of expertise can improve the design and conduct of research studies, if those with power (researchers, clinicians) are willing to share the power. This is not easy nor does it happen naturally, but requires reflection and a real change in how things are done.
● Uncertainty: The novelty of PPIE is exciting but brings with it a great deal of uncertainty. Lack of established processes or practices mean that you may have to create things from scratch, even in areas that are out of your comfort zone. For example, you may need to create entirely new processes for the finance and marketing departments in order to make direct electronic payments to public partners and accept subscriptions to the newsletter. Giving up control and being led by patient and public members also means that you may have to change plans unexpectedly. Amidst all this uncertainty, flexibility and adaptability is key. Be willing to change your assumptions, ways of working and plans, and accept that not everything will go to plan.
● Time & Effort: It is hard to do PPIE. Engagement in health research is relatively novel and challenges how things are usually done. Establishing meaningful relationships and building trust with patients, families and public members does not happen overnight, but requires time and persistence. Involvement and engagement activities, such as co-design, marketing and knowledge translation, all require the development of new skills and knowledge. Impact is often intangible and takes longer to achieve as you are involving more people in the process. Thus, PPIE work takes dedication, time, patience and persistence. Do not expect immediate results or be disheartened if things don’t work.
It is anticipated that the information, guidance and tools contained on these pages are helpful, and we remain available to support all those that share our vision. Do not hesitate to get in touch with PPIE practitioners at ppie@zu.edu.pk.