Patients with serious or chronic illnesses have the right to receive comprehensive information about their illness and the various treatment options. This additional knowledge, combined with participatory decision-making processes with the doctor, increases adherence to treatment and can help to improve the symptoms of the illness. In addition, those affected often have a broader or possibly even completely different view of the disease. In this way, they can help companies to tailor their research and services more closely to the needs of sufferers or users of medication.
Task
Expansion of an existing network of so-called patient ambassadors living with chronic neurological diseases to include people with rheumatic diseases. Regular workshops should deepen the contact and help to gain knowledge and information about the needs of sufferers and in turn translate these insights into initiatives and measures.
The project was carried out as external support in the Medical and Business Integrity/ Patient Affairs department.
Implementation/Results
What began in the first year as an exchange between patients and employees from the fields of medicine, marketing, research and development and communication became a solid customer table in the subsequent annual editions. In the end, doctors, health insurance representatives, medical professionals and care counsellors sat at the table alongside committed patients and their relatives as well as the client.
Whether in plenary sessions or in indication-specific small groups, the different points of view were very enriching – especially as it turned out that the positions were not so far apart.
In the end, this dialogue at eye level resulted in several approaches and suggestions that were subsequently examined and largely implemented: For example, instructions for use were made easier to understand in a patient-oriented way, apps for preparing for the consultation with the doctor were optimised and patients* were motivated to participate in clinical studies or in their design.
A total of five workshops were held, each with 20 patients and up to 40 participants, which met with a great response both internally and externally. In addition to the direct insights and improvements gained, the client also benefited in the long term – after all, it was much easier for them to maintain a mutual dialogue and work spontaneously with the patient ambassadors. “In the healthcare industry, people talk almost exclusively about patients. Here we talk to them. Here, you are recognised as a person,” said one patient ambassador who lives with Parkinson’s disease.
