We know you hate surveys. We truly do. Every time you buy an object, order take away, online grocery or come home from a holiday, you get a survey. Are you happy? Unhappy? Do you have something to complain about? Would you like to recommend our app? Do a review? Please, please, please provide us with your feedback! We need it to improve our product and services. We therefore completely understand that survey fatigue is a real thing. And that you are all very tired of filling in surveys and questionnaires. Covid-19 for sure didn’t make it any better.

Why do we need bigger and better data?

But unfortunately, this is one the many dilemmas the OI-organizations struggle with. Sometimes we really really really need big data and better statistics on a certain topic. We need it for grant applications, for policy work and for our patient experts. We need it to improve our socalled “product” – which is the treatment and services you get in your countries and local hospital.

What is the best way to get big data? Unfortunately…through a survey. And for this we need the help of our member organizations, their individual members and sometimes from the whole international OI-community.

The IMPACT survey is live!

First week of July we launched the the IMPACT survey in eight languages. It’s a joint research project we have been working together with the OIF and Mereo on since April 2020. Before the survey itself was created, the company Wickenstones did a very thorough literature search and review of what the biggest knowledge gaps in OI-research were. Their conclusion was that significant knowledge gaps exist.

The first global research project on OI!

We feel that IMPACT is much more than just another survey. It’s the very first global research project exploring the real impact OI has on people’s lives. It is aimed at capturing and quantifying the true challenges of life with OI to enable better diagnosis, treatment and care, and to support availability of potential future treatments for OI. It will give us insight in which challenges people with OI deal with in different countries. And about differences between countries, when it comes to access to treatments, mobility aids & services for people with OI and their families.

Several rare disease federations similar to OIFE, are doing similar impact projects, simply because they see that access to orphan drugs and improved services for people with rare conditions relies on better data. Therefore our goal is to make IMPACT the biggest and best OI-survey possible. Bigger and better data matters – and with your help we can develop it.

Databases & registries

This edition of OIFE Magazine is a special edition on databases and registries, which are also tools to fill the many knowledge gaps that exist for OI. But alas – we often encounter similar problems as for surveys. If registries and databases should give us new knowledge – we need people to contribute with their data. This includes clinicians – taking time to document their encounters with OI-patients. But it also requires input from people with OI and parents.

We need to fill in patient reported outcome measures (PROMS), which are used to assess our health status at a particular point in time. Do you have more pain now? Less fractures? Did the treatment improve your mobility?

And patient reported experience measures (PREMS) are also important. These are questionnaires measuring perceptions of your experience whilst receiving healthcare. Are you happy with the way treatment is being performed? Did you feel that the doctor had enough knowledge?

We need to continue donating our data!

If we are going to reach a higher level of knowledge on OI and better treatment and services, we therefore need to take a collective deep breath and just keep on filling in surveys and questionnaires. Doctors need to document the boring stuff. OI-organizations need to advocate for more regular follow-up and centralized & coordinated care of both children and adults with OI. Because – if people are not seen by the same hospitals/professionals, no expertise will ever develop. And no systematic collection of data will happen.

Only by working together we can make it happen. And remember…IMPACT is more than just another survey. It’s a unique opportunity to increase the knowledge about OI on a global level.

Join us and make an impact!

Ingunn Westerheim – OIFE president