Patient & Family Centered Research
Patient and family-centered research meaningfully involves patients, family members, and caregivers throughout the research process. Patients are partners–instead of research participants–whose perspectives and experiences are respected.
CLHSS has made a commitment to fully integrate patients, caregivers, and community members throughout our research work. Currently we are incorporating patient partners into existing projects.
Patient study partners play a vital role in ensuring that research is conducted in a way that is responsive to the needs and perspectives of the patient community, ultimately leading to more effective and meaningful research outcomes.
Some of the benefits that come with involving patient partners include:
- Insight into Patient Experience: Study partners, often individuals who have direct experience with the condition being studied, offer invaluable insights into the patient experience. This firsthand perspective can shape the research process, ensuring that studies are designed to address the most pressing concerns and priorities of patients.
- Enhanced Participant Engagement: Having a patient study partner involved in the research team can enhance participant engagement and recruitment. Patients may feel more comfortable participating in studies when they see that their perspectives are being valued and incorporated into the research process.
- Improved Study Design and Implementation: Patient study partners contribute to the development of research protocols, ensuring that studies are designed in a way that is practical and relevant to patients' lives. They can also provide feedback on study materials and procedures to enhance their clarity and accessibility.
- Study Interventions: Patient study partners can help ensure that research is conducted with sensitivity to the needs and preferences of participants. They can provide input on issues such as informed consent, privacy protections, and the potential impact of study interventions on participants' quality of life.
- Effective Communication: Patient study partners serve as liaisons between researchers and the broader patient community, helping to facilitate effective communication and collaboration. They can help researchers communicate study findings to patients in a way that is understandable and meaningful, and they can also help researchers solicit feedback from patients on study results and implications.
- Promotion of Patient-Centered Research: By including patient study partners in research teams, studies are more likely to be patient-centered, focusing on outcomes and interventions that are meaningful and relevant to patients. This can lead to research that has a greater impact on patient care and quality of life.
As a patient partner on our study team, you will collaborate with researchers, healthcare professionals, and other stakeholders to provide valuable input throughout the research process. Your role may include, but is not limited to, the following responsibilities:
- Providing insights and perspectives based on your lived experience as a patient or caregiver.
- Participating in regular meetings to discuss study progress, research findings, and potential implications for patient care.
- Reviewing study materials, such as research protocols, consent forms, and patient-facing materials, to ensure they are clear, understandable, and respectful of patient needs.
- Assisting with the recruitment of study participants and helping to ensure that their voices are heard and respected throughout the research process.
- Offering feedback and suggestions to researchers on ways to improve the study design, implementation, and dissemination of findings.
We welcome applications from individuals who meet the following qualifications and requirements:
- Have personal experience as a patient or caregiver related to the research topic.
- Possess excellent communication and collaboration skills.
- Can commit to attending regular meetings and actively participating in study activities.
- Are passionate about contributing to research efforts aimed at improving patient outcomes and healthcare delivery.
- Value diversity, equity, and inclusion, and are committed to representing the perspectives of all patients, including those from marginalized or underrepresented communities.
Application Process
To apply for the role of patient partner on our study team, please complete the following application form.
In addition to providing your contact information and background details, please respond thoughtfully to the application questions, as they will help us assess your suitability for the role. Shortlisted candidates may be invited for an interview to further discuss their interest and qualifications.
Once we have received and reviewed all applications, we will notify selected candidates and provide additional information about the study team and its activities. We look forward to the opportunity to work together to advance our research efforts and improve healthcare outcomes for patients and their families.
Current Opportunities
Exploring and testing new strategies to enhance patient portal adoption and engagement: A step toward equitable health care delivery
Join our groundbreaking research study exploring the dynamic bond between patients and MyChart! Whether you're a seasoned user or new to MyChart, your experience is invaluable. Be a part of shaping the future of healthcare technology - participate today!
Position Description
Position Title: Patient and Family Study Partner
Purpose:
Although many studies demonstrate that patient and family engagement leveraging tools like patient portals (Epic MyChart) in the management of their own and loved ones' health leads to a wide array of benefits, several patients are still not receiving the benefits due to its suboptimal use. There has been a substantial increase in the use of digital technologies (e.g., telehealth, remote monitoring,) during and after the emergence of COVID-19, the disparities in its use resulting from underlying structural inequalities such as sociodemographic characteristics of patients still remain an area of deep concern that needs further exploration.
Having patients and families as research partners with members would better allow us to identify areas that mean the most to the patients (end-users of technology). As part of the research team members, patient partners share their perspective, point of view and experience which becomes integrated into decision making to ensure high-quality, patient-centered care.
Position Overview:
The patient partner provides direction to the research team, on relevant topics for input with background and context on improvement opportunities pertaining to adoption and sustained use of patient portals. It would promote patient and family engagement in the management of their own and loved ones' health and better health care delivery.
Qualifications:
- 18+
- Any experience with MyChart
- Patient, family member or caregiver with one or more common chronic diseases (e.g., hypertension, diabetes, cancer, ischemic heart disease, stroke)
- Embrace the opportunity to showcase your patient journey and experience with MyChart
- Willingness to learn and understand different research strategies to become an invaluable part of our study team
- Willingness to use and understand technology and/or personal devices
Term:
20 hours over 1 year
$30 per hour
Join REST-PSLL in Revolutionizing Post-Operative Recovery
The REST-PSLL team is passionate about transforming the recovery journey for emergency abdominal surgery patients. Our mission is to pioneer cutting-edge solutions that empower patients to heal comfortably in the comfort of their homes.
We're seeking individuals who have navigated emergency abdominal surgery to collaborate with us. Your unique perspectives and experiences are crucial in co-creating innovative, patient-centric solutions that make a real impact. Together, let's shape the future of post-operative care and improve recovery outcomes. Join our team today and be part of this exciting journey towards better health and well-being.
Position Description
Purpose:
We are seeking Patient Study Partners to join the REST-PSLL (Re-engineering Surgical Recovery and Transitions Using Technology Patient Safety Learning Laboratory) study team at the University of Minnesota. The REST-PSLL study’s goal is to develop solutions–including technology solutions–that improve outcomes for patients who have had emergency abdominal surgery as they recover at home. We recognize that including the voice and point of view of patients who have had emergency abdominal surgery is essential in developing the best solutions for improved recovery.
Position Overview:
You will play a crucial role in the study team, providing important insights and personal experiences that would improve outcomes for future patients undergoing emergency abdominal surgery. Your ideas will be used to ensure high-quality, patient-focused care solutions.
Qualifications:
- 18+ years old
- Undergone emergency abdominal surgery between 1-3 years ago
- Includes emergency removal or repair of organs in your abdomen, such as colon, small bowel, spleen, stomach, and/or benign growths/tumors
- Interest in using your personal experience with emergency abdominal surgery to help a research team improve their study methods
- Capability to join virtual meetings via Zoom, receive emails, and access on-line study documents
- Preferred availability between 8am-5pm, but can be flexible to work with your schedule
- Ability to do some independent work
Contributions:
Using your personal experience with emergency abdominal surgery, you may contribute in the following possible ways, based on your interests:
- Collaborate with the study team to formulate questions for patient interviews.
- Participate alongside study team members during in-home visits with patients, contributing to our collaborative approach with professionalism and a supportive demeanor.
- Utilize your personal or lived experience to provide insightful interpretations of interview results with patients, enhancing our understanding with a blend of professionalism and empathy.
- Collaborate closely with the study team to develop innovative solutions aimed at supporting patients during their recovery at home, fostering a professional yet friendly environment focused on improving patient outcomes.
This is a 1-year commitment, with the possibility of participating longer. We anticipate that you will work 8-10 hours/month.
This is a paid position, and you will receive $30/hour.
If you have any questions about the role of patient partners on our study teams or the application process, please don't hesitate to contact Brooke Reece at reece056@umn.edu