Keeping stakeholders engaged and informed
Below we recap our thoughts around stakeholders and emphasise the importance of all stakeholders, including patients and carers, in dissemination.
Lindsey Brown is a lay representative at the University of Manchester; working with researchers and students to give a patient perspective on research proposals, patient literature, consultations and medical education. She also delivers sessions on lay language and how to involve service users. She started working with MAHSE in February 2016 and was appointed as one of two Lead Lay Representatives in February 2017. Below, Lindsey explains why it is important to involve and engage service users in research and innovation projects:
The NHS constitution in England states that ‘the patient will be at the heart of everything the NHS does’. This patient led approach is becoming more prominent worldwide, but while many people assume it means designing practices you believe we will want, a patient’s perspective can be different to those who work in healthcare. When you work in an organisation it becomes familiar; you see it differently to those of us who are experiencing it for the first time. Involving service users in your innovation projects can give you an insight into our experiences and ultimately help you to identify new research questions and develop practices that have a real impact on patients.
Healthcare Scientists often have an idea of the changes that they would like to make, be that new tests, changes to processes or developing new treatments. However, service user involvement has shown that we can have different priorities: aspects of our conditions that are a more pressing concern, tests that we find difficult or embarrassing, literature that we don’t understand, processes that cause us stress or seem to be an ineffective use of our time. We confuse healthcare professionals by failing to use aids or medication that we have been given or by ignoring advice, but we have reasons for our actions. Involving patients can give you a fresh perspective. We come with expertise in ourselves; our reactions, expectations, and our experiences of both your practices and our condition. We can tell you: what research, processes or new technologies we would like, what it’s really like to live with a condition, undergo your tests or use your equipment. We can tell you what improvements we would like to see, what affects us and what processes make our lives difficult. We can tell you what information we need and how to ensure we understand it. We can even tell you why we aren’t following your guidance, and what you could do to prevent this.
The contribution of service users doesn’t stop after the identification of research questions; we are involved in the design and oversight of projects, and in the collection, coding and analysis of data. Although it may seem unconventional to share these roles with people who may not have a scientific or research background, the different perspective can be an asset. In many areas of healthcare, research studies collapse because they fail to recruit or retain participants. With service users now sitting on many ethics panels and funding councils it can be difficult to gain approval if you are struggling to identify the full impact on patients or to write lay summaries in a language that the public can understand. Our insight can help you to identify aspects of your study which may deter potential participants and show you the true impact of your projects. We speak the language of our peers, so why not use us to create recruitment literature and co-write lay summaries? Our approach to writing questionnaires and interviewing patients might give you different answers from those they would express to a healthcare scientist. Even our interpretation of their responses may give you a new level of insight. Anecdotal feedback has even suggested that there can be a real benefit to having a voice free from organisational politics. We are tapped into networks, we can help you to identify the information that the public would want to hear and how they want to hear it, and if we believe in what you are doing, we can become your strongest advocates and promotors.
So whether you are trying to identify where innovations are needed, recruiting patients to a study, developing new processes, or trying to share your new practices, service users can provide a wealth of information and give you fresh eyes on your project. If we can see a problem, a solution and a way to spread the word about your innovations, then why not let us help? Think of it as having your own consultants, testers and a Public Relations team, but without the huge bill!
As we know from Week 1, patients and service users form just one group of stakeholders. It is important that you keep all stakeholders informed of progress. You also need to identify which stakeholders can help you with implementation and dissemination of your findings. Recap the 9Cs for your project; refer back to Step 1.9
Where can patient and public involvement be found within your clinical service? Use the comments section to share your ideas and gain insight from other learners.