FOR PATIENTS

We are committed to working with the community of people living with chronic illnesses and diseases

We understand the value of patient knowledge and are skilled at tapping into it.

Our background working with patients

The staff of admedicum has a vast history both part of and working with patient organisations. We always strive for a balance between genders and prioritise diversity.

"admedicum colleagues have genuine empathy and understood the problems of living with the disease. They understood and respected our independent position. If felt like we knew each other already for years and everyone shared a mutual respect."

Emma Margarete Reil

Chairperson, Sklerodermie e.V.

How we engage with patients

People living with the disease or illness are in the drivers’ seat and we start by listening to them and involving patients in everything we do

Starting point: a Need or a Question

It starts with a specific need or question that needs to be answered. We begin by reading background literature and standards of care if available. We try to understand the basics of the disease and living with it as best as we can from desk research.

Contacting Patient Organisations

We reach out to patient organisations first, to listen and learn from them and inform them about the project we are planning. We get feedback and adapt accordingly. Orphanet is an excellent source of information on patient organizations.

Patient organisations typically identify the best people we can work with. Whether it is these patient representative leaders themselves having an expert patient profile, or a more “typical patient” coming from their membership.

Contacting other online communities

If no patient organization for the condition or disease exists, we check other online communities like RareConnect, Facebook, and Twitter to identify people who can add their diverse voices to our project. We always strive for a balance between genders and prioritize diversity.

Sharing the Outcome

We co-create and collaborate with patients and industry in a variety of ways. A few examples of potential collaborations that admedicum typically works on with patients includes co-creation and review of patient-directed materials, plans for surveys (interviews and online), focus groups, patient advisory boards in clinical development. See our Case Studies for further examples.

Our work with patient organisations

Though many of our clients are pharmaceutical and biotech companies, we also work for patient organizations in multi-stakeholder alliances.

We believe in the power of groups of people to achieve a shared goal, we feel comfortable guiding those Alliances through our role as Secretariat or project manager.

One example of this is the European Alliance for Newborn Screening in Spinal Muscular Atrophy where admedicum acts as the Secretariat and coordinates the activity while managing the partners.

Get involved as a patient expert

You can collaborate with admedicum in a variety of ways, whether it is acting as a patient expert, or sharing your patient association’s challenges so that we can work on solving them together.

Are you a patient organisation that has a potential issue or challenge that admedicum can help you address? Are you an individual patient expert in your disease area, a EUPATI fellow, or a leader of a patient community?

Contact Robert to start the discussion robert.pleticha@admedicum.com

Let’s talk about the needs of your patient community and how we can overcome challenges together and create sustainable and meaningful change using a multi-stakeholder approach.

Robert Pleticha

International Senior Patient Engagement Manager