Where to Start with Patient Engagement

An indispensable prerequisite for the implementation of patient engagement within the company is to know first of all what patients want. This includes their needs, desires, priorities and preferences... See more. This is increasingly recognized in the pharmaceutical industry. In major publications on collaboration with patients, the European (EFPIA) and many national industry associations as e.g. the German Pharmaceutical Industry Association (BPI) or the Association of the British Pharmaceutical Industry (ABPI) have assigned great importance to this question See more

admedicum is pleased to announce a blog series on topics in patient engagement relevant to those in the pharmaceutical industry. This is the sixth and final part of the series. 

Part 1: Opportunities and Risks of Patient Engagement

Part 2: Impact on Strategy and Organization

Part 3: Impact on Research and Portfolio Management 

Part 4: Impact on Product Development

Part 5: Impact on Market Access and Services

Part 6: Where to Start with Patient Engagement

Understanding the needs of patients  

An indispensable prerequisite for the implementation of patient engagement within the company described in the previous blogs 1 – 5 (listed above), is to know first of all what patients want. This includes their needs, desires, priorities, and preferences. This is increasingly recognized in the pharmaceutical industry. In major publications on collaboration with patients, the European (EFPIA) and many national industry associations as e.g. the German Pharmaceutical Industry Association (BPI) or the Association of the British Pharmaceutical Industry (ABPI) have assigned great importance to this question. 

But how can patient needs be identified? How can one think from the patient’s perspective? And how can the knowledge, products, and services we gain to be used to optimize our products and services in line with requirements?

The patient: subject, consumer and co-producer  

The holistic perception of the patient is as a consumer, who selects, uses, finances and evaluates services, as a subject of the care processAlso, patients are co-producers with individual health and illness behaviors and with subjective wishes and expectations¹. Instead of talking about the patient exclusively with third parties, e.g. doctors and experts, it is increasingly recognized that it makes far more sense to also talk to the patients themselves. Scientific methods (qualitative and quantitative surveys, conjoint analyses, mixed-methods approaches) are available for this purpose². 

Self-help: a valuable dialogue partner  

It also requires involvement and transparent, fair dialogue with patient groups that empower their members. One must also not overlook the degree to which patient groups, and the benefits they provide to their members, differ greatly from one therapeutic area to another. While in some rare diseases (e.g. cystic fibrosis) very high participation rates are achieved (in some cases well over 50% of the prevalent patients or their relatives), this is not the case with widespread diseases. Only about 0.8% of all diabetics in Germany are members of a patient organization.  

Social media as sources of communication  

Spontaneous expressions by patients on social media or other Internet-based forms of communication (forums, chat rooms, etc.), are therefore becoming increasingly important. While unmet needs of patients are articulated very clearly here, these media, therefore, represent a valuable source of information. Pharmaceutical companies must ensure that the basic rules of transparency and respect are always observed in online interactions. Finally, processes for the detection of pharmacovigilance signals and their adequate processing must also be used³. 

Patients as consultants: patient advisory boards and panels 

Last but not least, patient advisory boards, patient panels or company-dedicated patient ambassadors also offer the opportunity to discuss patient-relevant questions in person or virtually.   

Openness towards patients is essential  

The pharmaceutical entrepreneur must understand in what orbit the respective company is moving around the patient. It is not so much the size of the company or available resources that are the rate-limiting factor, but rather the ability to systematically open the company mindset to the experiences, opinions, and needs of patients.  


¹ BPI (2016): Patientenorientierung aus Sicht der pharmazeutischen Industrie. https://kiosk.bpi.de/de/profiles/e0d97d378e69/editions/f3ce7a2bb7abe347ee42/pages?page=4 (downloaded 21.02.2019)

² Eur J Health Econ. 2015; 16(6): 657–670. Published online 2014 Aug 19. doi: 10.1007/s10198-014-0622-4

³ vgl. Good Pharmacovigilance Practices (GVP) der European Medicines Agency, VI.B.1.1.4.: Information on suspected adverse reactions from the internet or digital media.