If you want a rare disease project to succeed, it is essential for the various rare disease stakeholders to collaborate. These rare disease stakeholders may include healthcare professionals, patients and their families, patient advocates and organizations, researchers, policy-makers, governmental agencies and academic institutions. We all know the benefits of successful multi-stakeholder partnerships (you can find many excellent examples within the European Reference Networks). However the reality is that getting along with new people and working together isn’t always a piece a cake. Everyone comes with a different set of skills, personalities and backgrounds. If you’re involved in the management or coordination of a rare disease project your aim is to ensure that all members participate actively (and feel valued) in order to accomplish the project’s goals.
Here are my top tips for how to successfully collaborate with all rare disease stakeholders so that your group thrives and your project is a success.
Show that you are reliable AND trustworthy
No matter who you are interacting with, people value others who are reliable and trustworthy. What do I mean by this? Well, if you say that you will perform an action by a certain date or time, people want to know that they can rely on you to do just that. Keep your word and people will quickly see that you are reliable.
Similarly, if someone in the group has a concern or needs to talk, but would like it to remain confidential, be that person for them. If you need to discuss the issue with the group, do it in a way that maintains their confidentiality. When people know that they can trust you, you earn their respect. Transparency within a group is important but it is not always necessary to call anyone out. Don’t forget that earning trust takes time. Give the group opportunities and time to get to know each other and form mutually beneficial relationships.
Treat EVERYONE with respect
You may be working with patient advocates, world-renowned medical experts or high-level political figures, but everyone is at the same level when it comes to the rare disease project. That’s not to say that you can’t have admiration for certain people, but show respect to all. Everyone’s voice matters and everyone’s voice should be heard. If this isn’t the case, make it happen by steering the conversation to those who you feel are being left out. It might not even be intentional, as there are always natural “leaders” (often extroverts) that develop in groups. What is important is that these leaders do not monopolize the conversation or make decisions without consulting the other group members.
Speaking of decisions; make sure that all players are involved in designing a project from the start. That way everyone’s needs are heard and you minimize the potential complaints that can come later. Trust me on this one, it will save you lots of time, energy and money. Remember that each member of the group brings something valuable to the table so make sure that everyone feels included and that no one person is put on a pedestal.
Understand that everyone is different and listen to everyone’s point of view
Everyone working in the rare disease field has their own background, stories, struggles and biases. It is normal that people will approach a problem or challenge differently. Communication styles will also differ based on individual personalities and cultural differences (and languages). What is important is that, despite the differences, everyone is respectful to all members of the group. When people feel safe, they can share their feelings openly, which is when the best ideas are expressed.
Listen to everyone’s voice and try as much as possible to remain neutral. You may have a side that you naturally support, but try not to show your bias. If you feel your ego coming into play during a discussion, remember that it is not about you. It is about the group as a whole and, more importantly, about the desired aims of the project. If you see the group having trouble agreeing on a certain point, act as a moderator. You can do this by trying to find common ground and by proposing a compromise that considers everyone’s comments or by suggesting a vote.
Show empathy and accommodate special requests when possible
As already mentioned, everyone has different circumstances and experiences to deal with. At times there can be tensions when opposing views arise. Try to show empathy and kindness as much as possible to someone else’s situation. Remember that patient advocates have their (or a family member’s) rare disease to deal with, in addition to a job and/or their patient organization to manage. Healthcare professionals have pressure from their hospital administration, in addition to their academic work and family life. Everyone’s time is valuable. Make sure that meetings are set at times that work for everyone. Ensure that an agenda is sent out in advance so that the meeting can run as efficiently as possible. Be mindful of everyone’s limitations and try, as much as possible, to accommodate any special requests (within reason). No one should experience additional stress (be it emotional, physical or financial) for participating in the project.
Communicate your group’s progress and celebrate its wins
Hopefully your group can meet up on a regular basis (depending on everyone’s availabilities) in order for all objectives to be clearly stated and for actions to be put into place so that the project can advance. Communicating about the group’s actions and its progress is one way to encourage all members that they are making a difference and feel more connected.
You can do this via group e-mail updates, articles on your website, a newsletter with latest updates or with social media posts (if you need help with any of these services, don’t hesitate to contact me). Make these updates a celebration of the small and big advances of the group. You can also start a tradition that all members of the group enjoy, like taking a fun group photo at every in-person meeting that is then shared online.
I hope you enjoyed these personal tips of mine that I have always tried to use at work. They are, of course, very general recommendations for anyone working on a rare disease project or program who wishes to foster a good collaborative spirit within a group.
If you want more targeted advice you can find many resources online, including those focused on patient-clinician collaborations (see the Eurordis YouTube playlist “ePAG best practices” for videos presenting examples of successful patient-clinician collaborations in the ERNs) or patient-researcher collaborations (see the EJP RD short guide on patient partnerships in rare diseases research projects), to name a few.
At the end of the day, having all important stakeholders involved in a rare disease project benefits everyone. I have personally seen what amazing deliverables can result from everyone working towards a common goal. The most important thing is to realize that you are all part of the same team and that together we are stronger!
