Patients with serious or chronic conditions, in particular, have the right to receive comprehensive information about their condition and the various treatment options available. This greater knowledge, combined with participatory decision-making processes with their doctor, increases adherence to treatment and can help to alleviate symptoms. Furthermore, those affected often have a broader, or possibly even a completely different, perspective on the condition. In this way, they can help companies tailor their research and services more closely to the needs of patients and those using medication.
Expanding an existing network of so-called patient ambassadors who live with chronic neurological conditions to include people with rheumatic conditions. Regular workshops should strengthen ties and help to gather insights and information about the needs of patients, and in turn translate these insights into initiatives and measures.
The project was carried out as external support in the area of Medical and Business Integrity/Patient Affairs.
What began in the first year as an exchange between patients and staff from the fields of medicine, marketing, research and development, and communications evolved into a fully-fledged Customer Table in subsequent annual editions. In the end, the meeting was attended not only by committed patients and their relatives, as well as the client, but also by doctors, health insurance representatives, healthcare professionals and care advisors.
Whether in plenary sessions or in small groups focused on specific conditions, the different perspectives proved to be a great asset – especially as it became clear that the positions were not actually that far apart.
Ultimately, this dialogue between equals yielded a number of ideas and suggestions, which were subsequently reviewed and, for the most part, put into practice: for example, patient information leaflets were made easier to understand, apps designed to help patients prepare for consultations with their doctor were optimised, and patients were encouraged to take part in clinical trials or to contribute to their design.
A total of five workshops were held, each attended by 20 patients and up to 40 participants, and they were very well received both internally and externally. In addition to the immediate insights and improvements, the client also benefited in the long term – as it subsequently became much easier for them to maintain mutual dialogue and collaborate spontaneously with the patient ambassadors. “In the healthcare industry, people talk almost exclusively about patients. Here, they talk with them. Here, you are seen as a human being,” summed up a patient ambassador living with Parkinson’s disease.
