Patient & Family Centered Research
Patient and family-centered research aims to redefine traditional research roles by emphasizing that patients, family members, and caregivers are not only study participants —they are integral members of our research team. Unlike research participants, who are typically the ones being studied, our patient and family study partners actively collaborate with researchers throughout every stage of the research process.
CLHSS has made a commitment to fully integrate patients, caregivers, and community members throughout our research work. Join us as we explore the transformative impact of genuine partnership in research, where the voices and experiences of patients and families drive innovation and change.
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
Join Our Patient Safety Learning Lab in Revolutionizing Post-Operative Recovery
The REST-PSLL (Re-engineering Surgical Recovery and Transitions Using Technology Patient Safety Learning Laboratory) 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 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.
Join Our Team and Make a Difference in Patient Care!
Are you 65 or older and have had surgery in the past few years? We’re looking for passionate individuals like you to join the I CAN DO Surgical ACP Study team at the University of Minnesota! This study is all about improving Advance Care Planning (ACP), helping patients make informed decisions about their healthcare.
Your personal health journey is invaluable! We need your insights and experiences to ensure this study truly supports patients and meets their needs. By sharing your story, you’ll play a key role in shaping research that can have a real, positive impact on the future of patient care. Your voice matters – and we can’t wait to have you on our team!
Position Description
Position Title: Patient Advisory Council Member
Purpose:
We are seeking Patient Advisory Council Members to join the I CAN DO Surgical ACP study team at the University of Minnesota. The I CAN DO Surgical ACP’s study’s goal is to increase Advance Care Planning (ACP) support for patients. Advance care planning is an important way for patients to have a voice in their healthcare and for medical providers to honor patient wishes. It allows someone to name a trusted person to help make medical decisions in case of an emergency. It also allows them to tell this trusted person and their medical providers what is most important for their quality of life and for their healthcare now and in the future.
Partnering with patients is crucial to ensure the study truly reflects their needs and provides the most meaningful benefits. Your input will help shape the study in a way that directly supports patients and their care decisions.
Position Overview:
You will play a crucial role in the study team, providing important insights and guidance. You will help improve our overall study design and interpret our study results, leading to positive impacts for future patients. Your voice and perspective are essential to make sure the study meets the needs of patients like you and has a positive impact on patients.
Qualifications:
- 65+ years old
- Comfortable sharing your experiences to help shape how our research works and make it better for people like you
- Undergone surgery in the past 5 years that required you to stay in the hospital for at least one night:
- Includes emergency or elective surgery. Some examples include: exploratory laparotomy (surgery through a large incision on your abdomen to fix a problem, usually emergently), colectomy (taking out part of your colon), hysterectomy (taking out the uterus), coronary artery bypass graft (CABG surgery/open heart surgery), vascular bypass surgery (surgery reconnecting your blood vessels), hepatectomy (taking out part of your liver)
- Interest in consulting on study design and evaluation to help a research team improve their study methods (no prior experience necessary)
- Capability to join virtual meetings via Zoom, receive emails, and access on-line study documents
- We prefer availability between 8 a.m. – 5 p.m., but we can work with your schedule.
- You can complete some short tasks on your own before meetings, but don’t worry – we’ll guide you along the way!
Contributions:
Using your personal experiences, here’s what you can expect to contribute:
- Work with our team to make the study design even better – from improving messages and patient documents to making sure everything feels clear and accessible.
- Team up with us to develop questions we ask patients, making sure they reflect what really matters to people like you
- Use your own lived experience to help us interpret the study results, ensuring they truly speak to the needs of patients.
This is a flexible 1-year commitment, with the option to renew. If you would like, you can stop participating in this council at any point. We anticipate that you will work up to 5 hours total, over the course of 2-4 short meetings. 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 [email protected]