“Nothing about us without us”: Establishing a Patient Think Tank with #dedoc° at Charité
To date, patients have been predominantly viewed as passive recipients of therapies, products or healthcare services that are made available to them. However, under the mantra "Nothing about us without us", there is an increasing demand from patients for including them as relevant stakeholders in the development of services, products, medical guidelines and educational resources. Moreover, it can take many years for new therapies or technological innovations to reach patients. Movements such as #WeAreNotWaiting show how informed patients are already collaboratively and actively reshaping the medical device industry and regulatory landscape (such as in the OPEN project).
The working group around Dr. Katarina Braune combines expertise from the fields of medicine, design thinking, data science, politics and patient advocacy with lived and learned experience with type 1 diabetes and works closely – also in this project – with #dedoc°, a patient-oriented consultancy by and for people with diabetes.
Funded by a QUEST Grant for Patient & Stakeholder Engagement from July to December 2021, the project explored the following questions:
- How do patient innovators actually work, and what can we learn from them?
- Could #WeAreNotWaiting become a blueprint for redesigning all aspects of healthcare? What if patients would "hack" not only their medical devices, but also their healthcare, research, communication with and training of physicians and other healthcare professionals?
To this end, this pilot project pursued two activities:
- Setting up a “Patient Think Tank”
- Patient Advocates in higher education: Professional communication about and with patients
Patient Think Tank
In the Patient Think Tank (Fig. 1), patients and their relatives work together to develop concepts for their healthcare, research that affects them, digital innovations and tools. In addition, they develop ideas for professional trainings of the next generation of doctors. The aim is to implement these ideas and concepts together with other stakeholder from science, medicine, politics and industry.
In a first step, a core group of about five patients and relatives was invited as the first members of the Think Tank. Initially, the Patient Think Tank is aimed at people with type 1 diabetes as a role model for a chronic, non-communicable and lifelong disease for people of all ages that requires a high degree of self-management. Later on, other people with other chronic diseases can be invited to the Think Tank to learn from each other and to plan and conduct joint projects. Thus, the Think Tank may one day become a hub for colleagues from Charité and BIH or for external Patient and Stakeholder Engagement projects.
Patient Advocates in higher education
In the second part of the project, the Patient Think Tank came into action for the first time in the winter semester 2021/22 course "Ethical foundations of medical decision-making in paediatric and adolescent medicine". Established approaches of communication theory (non-violent communication, interactive perspective) were combined with new aspects of the international #LanguageMatters movement. Members of the Patient Think Tank designed the course to engage directly with medical students on how the use of words in medical care can affect the physical and emotional well-being of people with chronic illnesses, for example by implicitly or explicitly assigning blame (Fig. 2). The results of the collaborative work will be compiled for a publication on the topic of sensitive language¹.
Further results of the joint work will be presented in a workshop in February 2022. In addition, they will be used to plan follow-up funding to enable a continuation of the Patient Think Tank.
¹In November 2022, the German language position paper on "Diabetes and Language" was published. Information on the publication of the paper is available here, and it can be downloaded under this link.