Skip to main content

Table 3 Social innovations identified in think tank discussions – supplementary quotes

From: Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation

1 Civil society innovations

 1.1 Providing information and support to families

  [1.1a] Multiple Roles 6: “My doctors didn’t know what was going on and I reached out to one of the families in New Zealand. She [mother] told me she could take our data to her hospital and show it to her physician, and they took my daughter into account (…) and we just immediately got feedback. (…) So getting those resources out to parents would be very helpful.”

 1.2 Advocating for social and financial support

  [1.2a] Patient/Family Member 13: “We’re in such small numbers in each country. I was wondering: ‘Would it make sense to create some sort of CDG Europe?’ (…) Then maybe it would be easier to approach insurance companies. And it actually would be easier to access funding (…)”.

 1.3 Promoting research

  [1.3b] Multiple Roles 16: “It is [important] for physicians across the globe to begin to really collaborate and learn from each other in a very different way that we’ve traditionally done. (…) So I think that’s something else parents and family organizations can push towards. (…) We want lots of places (…) all around the world talking to each other, so that we’re sharing the new things that are getting learned in a faster, easier way.”

2 Care-related innovations

 2.1 Increasing professionals’ awareness

  [2.1a] Multiple Roles 14: If physicians are going to take their board examinations, they will learn about certain diseases, and people learn quickly if they know that they’re likely to be asked about CDG. (…) But another thing (…) is to give conference talks, to publish articles about it.”

  2.2 Improving care approaches

  [2.2a] Professional 3: “I think you have to identify a few important problems that are common within the group of CDG patients and then try to find information that is already there, just a retrospective analysis. And then, maybe try to put forward a few strategies and test them in the population so you can make progress in this disease group.”

  [2.2b] Multiple Roles 8: “The next thing that should happen is that we exchange what we think about it with doctors in other countries who have treated patients with the same problem. (…) And (…) we can identify what has been done and what was the outcome. This will enable us to get better treatment strategies.”

 2.3 Families’ involvement in treatment

  [2.3a] Patient/Family Member 18: “Sometimes we [parents] just have to think: ´I’m going do it and get over the embarrassment. (…) If I don’t understand, I’m going to keep repeating my question until I get an answer.”

3 Digital innovations

 3.1 Developing a CDG expertise online platform

  [3.1a] Patient/Family Member 11: “Structured online platforms are really the way ahead. Controlled information could be disseminated, questions could be asked but, yes, it does need to be an international platform.”

  [3.1b] Multiple Roles 8: “It’s important that we have different country representatives because resources and health structures are very different in different countries.”

  [3.1c] Professional 3: “The information exchanged in a platform like that has to be controlled medically (…) it can’t just be an open platform of communication where information is exchanged. That can sometimes be even dangerous to patients.”