Collective Insight

Measurement Matters is a project funded by the Patient-Centered Outcomes Research Institute (PCORI) (SOE-2022C2-28570). The purpose of this project is to create and test a new survey to measure research engagement, which we are referring to as the Patient Centered Outcome Research Engagement Measure (PCOR-EM) survey.

We mean the meaningful involvement and partnership of patients and stakeholders throughout the research process, from planning and conducting research to disseminating research results.[1] [1] The PCORI Engagement Rubric. PCORI (Patient-Centered Outcomes Research Institute) website. http://www.pcori.org/sites/default/files/Engagement-Rubric.pdf. Published February 4, 2014. Updated June 6, 2016. Accessed January 19, 2024.

We mean those who engage in your research process who have personal or community experience relevant to your research topic.

Our research team, with guidance from our Steering Committee and Technical Advisors, conducted a literature scan, consensus methods, focus groups, and cognitive testing to inform our development of the PCOR-EM. You can find out more about each of these activities and their findings at Measurement Matters Project | Collective Insight.

Pilot testing is a method used after you develop a survey to help improve a survey. More specifically, pilot testing helps us make the PCOR-EM is valid (it accurately measures what we intend it to) and reliable (the survey is consistent from one person to the next). Our pilot testing results will guide our improvements of the PCOR-EM so it can effectively measure meaningful collaboration in research.

The purpose of pilot testing is to improve the measurement of engagement. This survey has not yet been proven to effectively measure engagement. Your participation in this study will help us improve this survey so one day we can make it broadly available to measure engagement and share results.

We seek participants with varying levels of engagement experience to complete this survey, including very little experience and a lot of experience. We are looking for approximately 300 individuals who can report on patient or community engagement within an active or recent PCORI-funded or PCORnet designated research project. These include: · Research lead investigators · Project managers · Patient engagement officers · Patient or community partners

You are eligible for this study if: · You can complete an English web-based survey · You are actively working or have recently worked on a PCORI-funded or PCORnet designated project · You can answer questions specific to patient or community engagement within the PCORI project · The project may impact (directly or indirectly) older adults (e.g., research on chronic conditions)

We are looking to pilot test the PCOR-EM through May of 2025.

First, survey participants will review eligibility and will confirm their eligibility. Participants who do not meet eligibility will be directed to the end of the survey. Participants who are eligible will review an informed consent and type their name and the date to confirm they consent to participate in the study. Participants will then be asked to read the piloting instructions, respond to 30 items to evaluate engagement in their project, and respond to 40 items that collect confidential and non-identifiable information about them and their project. Participants who complete the full survey will be directed to a separate, secured survey to select one of three vendors from whom they would like to receive a gift card for participating. They also may choose to opt out of receiving a gift card.

This survey should take no longer than 25 minutes from start to completion.

You will receive a $35 USD eGift card from your choice of Amazon, Target, or Walmart. You also will be on the cutting edge of engagement science and have access to our groundbreaking Pilot Testing results at Measurement Matters Project | Collective Insight.

A member of the research team is available to coordinate accommodations requested by participants. This could include ensuring you have access to a screen reader program, paper version of the PCOR-EM, or someone to help complete and submit answers. Please contact missy@collectinsight.com for support.

Click HERE or contact missy@collectinsight.com for assistance.

Yes, please forward the survey link to anyone you may think meets the eligibility criteria for this study. Please refer to the answer above that describes eligibility for this study.

We know engagement is a sensitive topic. We take your confidentiality and data privacy seriously. Our survey questions do not include questions that make you identifiable to other people. Also, you have the option to not answer questions about your characteristics, if you prefer. No one will know you participated in this study and the answers you provided, unless you tell them. The answers you provide will be combined with the answers others provide to analyze and report on findings as a group. We are not reporting individual findings to you or anyone else. Your name is not being collected for the PCOR-EM. You are asked to provide your name on the consent form and for your gift card. This data is also managed by staff trained in confidentiality and data security. Your name and contact information, requested only for consent and gift card purposes, is not linked to you PCOR-EM responses to protect your privacy.

Your survey responses will be stored in a secure virtual file under password protection. Survey responses will be stored for a minimum of 3 years and then securely disposed in alignment with Boston College data security policies. Approved and appropriately trained members of the research team are the only people who can see personal information, such as your name and contact information.

All participants are encouraged to visit Measurement Matters Project | Collective Insight frequently for updates on this study, including our pilot testing findings. We expect to have a report on our findings in fall of 2025.

There are always some small risks and benefits to participating in a study. For instance, you may find some of the questions you are asked to be sensitive in nature. You also may worry that the answers you provide will be held against you in some way. Your name or other identifiable information will not be collected or reported as a part of the survey so no one will know if you participated in this study unless you tell them. We will report general, non-identifiable information about you and other survey participants, such as your level of education, race, ethnicity, gender, age, geographic location, experience, general research type, engagement experience, and engagement outcomes. You are asked to provide your name on the consent form and for your gift card. This data is also managed by staff trained in confidentiality and data security. Your name and contact information, requested only for consent and gift card purposes, is not linked to you PCOR-EM responses to protect your privacy.

You can choose to exist the survey at any time. Your participation or decision not to participate will not impact your relationship with the Measurement Matters team, its affiliated organizations, or funders.