Results
Review data collected with community partner, course director, and course coordinator.
Analyze data (assistance available).
Create a summary of findings, including interpretation of your data and analysis (assistance available).
Grace Kelly: Results
Going through my objectives and what has been discovered thus far:
“1. Recruit at least 5 families who satisfy the qualifications of the grant. This will involve identifying barriers to recruitment experienced thus far and implementing strategies to combat these.”
2 families are enrolled in the study officially, and 4 additional families have been identified as good candidates. There have been barriers with obtaining written (vs verbal) consent to allow for these families’ information to be shared with PWC.
Several strategies have led to improved recruitment however: the implementation of a PWC/CLEAR/Health Department Epic referral system which allows for patients who are in the hospital and qualify for CLEAR to have their data shared with PWC in case they do not qualify for CLEAR. The issues with this referral system is that some of the families do not meeting the housing standards (live in Hamilton Co, City of Cincinnati, and in a building with <= 3 units). The other strategy that has worked included identifying a list of pulmonary clinic patients who meet the uncontrolled asthma criteria, finding who lives within the city of Cincinnati, and calling them to ask if they have any housing risks. This method has been successful but finding patients who meet criteria, but we have hit barriers when it comes to getting written consent to share their info with PWC.
There have been some failed or abandoned initiatives along the way as well- a presentation was created for sharing this information with the residents, but Dr. Newman felt that is was better to limit recruitment to the pulmonary clinic to start. Although, I think making residents aware of PWC’s services could be a future endeavor.
“3. Create a relationship between Cincinnati Children’s and PWC that will allow this project to continue to thrive beyond the first round of participants.” There are more people aware of this through Dr. Beck’s efforts to add the EPIC referral, but adding the resident education may be a good next step.
“4. Assess any preliminary data to rate the effectiveness of the CAFE project.” No preliminary data as recruitment has been stalled.
5. Propose a strategy for expanding this assessment model to other interventions.
A RedCap survey has been created. A recent literature review found that a study with similar housing interventions was performed in Philadelphia, and much of their survey, with the addition of other validated surveys including the COPD Assessment Test, the PHQ2, Medicare fall risk questions, health care utilization questions, and self reported health were all implemented into a single questionnaire. The idea is that chronic conditions with a suspected environmental trigger should be evaluated with additional questions beyond the basic utilization questions. In creating this survey I revealed a lack of research on the social determinant of housing, and NO research about housing impacting COPD, despite the fact that avoiding triggers are a major recommendation. I look forward to implementing this survey, although results will not be available by the end of the academic year.
Grace- thanks for the detailed update and congrats on your progress to date on each objective. Great work! Great to see the recruitment and potential for sustainability. You mention a number or barriers in the first objective. I am wondering if you see these as resolving with time or as 100% roadblocks? The survey in AIM 5 sounds exciting.
The biggest barrier is requiring written consent- I am hoping that this can be circumvented with some planning. Other barriers I think could resolve with time, but they rely on others having the bandwidth to take on an additional project
There have been a lot of road blocks in implementation. The Redcap survey is set up for dissemination, a guide on extracting results has been created. PWC has not yet been able to begin utilizing the survey.
I sought some feedback on this project from a mentor of mine, and I’m concerned that in the process of trying to make up for the roadblocks encountered with the CAFE project that I created more work than PWC has the bandwidth for. They suggested that focusing on one intervention may have been better.
I want to offer a few reflections on my experiences from this project:
1- Sometimes policies meant to help patients are implemented in a way that hurts them and hurts progress. Specifically requiring written consent for an IRB makes sense for human-subjects research makes sense, but requiring it for non-human subjects research where the intervention poses little to no risk and only benefit for the patient and their family creates an unnecessary barrier.
2- Non-profits have limited bandwidth and physicians sometimes have limited bandwidth and then when trying to do a project together it becomes a stressor on both sides. Bringing in a student seems like a great way to fix this, except as a student I need mentorship from the physicians and buy-in from the non-profit. My experience was that I had more time to devote to this than everyone, but in all honesty- I can do work but if the non-profit or the hospital can’t implement my work (e.g. getting written consent from patients or changing the IRB and disseminating the survey) then it’s not helpful. While I think that I was responding to what PWC needed, I feel badly that I’m not able to see the project through implementation and results. I feel like I may have created something that they thought would be useful but on MY timeline, and they may be busy at present moment.
While I have experienced a lot of frustration- I am eager to have my final meetings and reflect with PWC about how they felt things went, because honestly my perception of frustration or failure may not be how they feel. Ultimately, if PWC is happy with the options they have for evaluating their impact, feel that they have a better relationship with CCHMC, or have a better understanding of the CAFE roadblocks this project will have been a success. My goal was to help PWC achieve their goals, and I hope that they are closer even if it is not perfect.
Grace, thanks for your reflection on the experience and how it impacts the patients and community. Your empathy shines through. I wish I could take away your frustration. I hope your meeting with PWC will salve that wound some. Community engagement is messy and beautiful all at the same time. I care to believe you you helped move the ball for this relationship and/or helped them better understand the complexity of the relationship and the why to the barriers they are facing. That in itself is also a win that I feel you should celebrate.