…”Well yes, we know that patient engagement is essential, but how do you go about it?”
This is something we’ve heard quite a lot in the past and it’s something that we really have to consider when embarking on a patient engagement journey, no matter what stage in the product life cycle is in question is in question. The question is not asked to avoid having to involve patients. Instead, it seems that engaging patients in research and development is considered so important that there is a genuine concern that organisations might do it wrong or create more burden to the patient community than the good that it brings. That is a fair consideration.
However, what needs to be understood is that this is exactly the kind of question you should be involving patients to help answer. To our experience, patient organisations expect being engaged in research and development of medical products and healthcare for their patient communities. Think of it as human-centred design; you would not create a product without first checking your market that the product is needed, right? Nor would you try to improve an existing product without asking the user first which aspect of it needs improving. If the patient organisation feels your project is not aligned with their goals or that they don’t have the capacity to collaborate, they will let you know. Then you have at least opened the dialogue and you’ll know for sure whether your request is burdensome or value-adding.
For stakeholders looking to involve patients in their work
To help you get started with your patient engagement journey, we have gathered a few very basic and quite essential guides that have been either co-created with or created by the patient community. Take these as a way to build your basic knowledge about patient engagement and adjust the suggested models of interaction to fit your specific situation.
WECAN & PFMD collaboration:
Need more support? Contact us to discuss how to collaborate with patients in a systematic way that brings value to both.
For the patient community looking to work with pharmaceutical/ medical technology industry
These are only a few resources that can help build capabilities for your organisation to start working with Pharmaceutical and MedTech companies. Take these as a way to build your basic knowledge about how these companies might go about to do patient engagement and use these resources when planning collaboration.
IMI-PARADIGM
- Managing conflicting interests – Guide for patients
- Patient engagement contracts explained
- Share4Rare Advocacy Toolkit helps patients and patient organisations to set a strong basis for advocacy efforts: https://www.share4rare.org/library/share4rare-toolkit-patient-advocacy/share4rare-toolkit-patient-advocacy
Need more support? Contact us to discuss how to collaborate with the Pharmaceutical or MedTech companies in a systematic way that brings value to both.
