Chapter Three
Recognize Roadblocks
Identify and Overcome Barriers
We recognize our barriers to doing patient-centered outcomes research, for the project team and for research participants:
Time
Life is busy and demands on everyone’s time are high.
Knowledge
May not be experienced with PCOR our have a lack of knowledge
Resources
Compensation, logistical support for everyone’s time and effort on the project
Confidence
About my contribution, the benefit of the project, and the risks of the project
#1 Reasons that parents/children decide NOT to enroll in a research study
Build
Build opportunities to interact into the project.
- Existing Relationships
Build on existing relationships – and trust – between patient partners and their transplant team - Forums
Provide forums for patient partners to interact and exchange ideas – with the research team and with each other
“The balancing act was much bigger swings that we had expected – the biggest worries where when we didn’t know what was happening. Problems with her hemoglobin but we didn’t know why. We were worried about uncovering additional issues that we didn’t know were going to happen.”
– Parent of a pediatric transplant patient
Acknowledge and Value
Acknowledge and value the experiences and time of all participants.
- Listen
Listen to the priorities, concerns, and suggestions of patient partners and other providers – at every project stage, design through the sharing of results - Compensate
Compensate participants for all of their time and effort dedicated to the project - Create Opportunities
Create specific opportunities in all meeting/discussions for families and non-MD stakeholders to share their experiences and voice their opinions - Use Clear Language
Avoid – or explain – medical or technical jargon in meetings
“Our first year was a big struggle, because it was up and down with rejection…even after 11 years is still [difficult]. Everything just happened so quickly for us, and so overwhelming, that after it was over I was still learning…and I thank you for this, because its been a long time since I’ve had somebody that’s know what I’ve gone through, and we openly talk about it again. My family knows but they don’t know, you know what I mean.”
– Parent of a pediatric transplant patient
Empower
Empower all participants to contribute actively.
- Educate
Provide easy-to-access and easy-to-understand education about research to interested stakeholders - Engage
Engage patient partners, providers in different roles, and other stakeholders through ALL stages of the project, starting with design - Create Roles
Create specific roles and ownership of responsibilities for all participating stakeholders - Pursue Diversity
Actively pursue diversity – Ensure that those who are underrepresented have opportunities to participate and voice their perspective
“The whole first year was a roller coaster, that felt like one big downhill – hang on and scream and try to listen – there’s so much new stuff thrown at you. The PICC line, the frequent blood draws and visits, constant adjustments. Now climbing the hills is a little longer – sometimes I’m still waiting for the shoe to drop.”
– Parent of a pediatric transplant patient
Follow Through
Be transparent – and follow through – on how the research project will change care.
- Be Clear
In every stage of the project be clear about the benefits and the burden or risks of participation - Update
Share updates and elicit feedback throughout the project. - Respond
Respond to the feedback, by making improvements where possible and letting people know about
“The more that you get used to it, and you see your child progressing, it gets easier. We were so pushed into something that was such a shock – but it puts us so on guard about everything for such a long time, its hard to let go. Puts a lot of pressure and stress on the parent – but we don’t want the child to know that.”
– Parent of a pediatric transplant patient
