Webinar Protocol and Guide for Facilitators

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1 Webinar Protocol and Guide for Facilitators Bringing STakeholders Together for Engagement in Research for the Selection of Arthroplasty Implant Devices (BeTTER SAID) Title: Patients & researchers partnering to address the safety of joint replacement Time: 1 hour Attendees: 1 Facilitator, 1-2 Additional Staff, 4-6 Patient Participants 5 Minutes Prior to Webinar Start Time (Slide 1) Begin the webinar using GoToMeeting at least 5 minutes prior to the start time and share screen with the title slide visible (Slide 1). In the chat box, type a welcome message to Everyone: Welcome to the discussion on joint replacement and research! We will start in a few minutes. Please call into the conference line at , code #. Call into the conference line at least 5 minutes prior to the start time. As new people join the conference call line, welcome them onto the call by saying: Hello and welcome! We will start in a few minutes. If you need assistance logging onto GoToMeeting, please let us know and we can assist you. For participants who are unable to join GoToMeeting, a PDF of the webinar slide deck so that they can follow along with the discussion. Who s Out There? Welcome (Slides 1-6) Agenda As soon as everyone has joined the webinar and no later than 5 minutes after the start time, begin by welcoming everyone and thanking them for participating in the discussion: Welcome and thank you for joining us for a discussion of joint replacement experiences and research. (Advance to Slide 2 Agenda ).This call will last for about 1 hour and will include the following topics Facilitator will briefly present the agenda topics. Who s out there? Welcome 5 mins What do we know? Registration Results 5 mins What can we do? Research Roles for Patients 45 mins What s the next step? Wrap-Up 5 mins By the end of this webinar, we will likely end up with more questions than answers. The purpose of this call is to share patient decisions and experiences related to joint replacement (arthroplasty) and to talk about how patients can be involved in helping to determine and enact research in this area.

2 Welcome!/Introductions Facilitator and colleagues will briefly introduce themselves (Slide 3- Welcome ) and state that This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (2228-GHLF). (Advance to Slide 4- Consent ) Global Healthy Living Foundation, CreakyJoints and RAND will use the information you provide during this discussion for research purposes only. Everything you say in this discussion will be treated confidentially. In our reports, comments will not be attributed to specific individuals or organizations. In conversations you have outside of the discussion, we request that you also protect the confidentiality of others in the group. Please do not repeat anything that is said here in a way that is attributable to a particular person or organization. As you decide what to share with others during the discussion, however, keep in mind that Global Healthy Living Foundation, CreakyJoints and RAND cannot guarantee that everything you say will be kept confidential by all of the participants. And finally, we're audio recording the session because we don't want to miss any of your comments. The recordings will be used to create de-identified transcripts; after the transcripts have been created, the recordings will be destroyed. The de-identified transcripts will be included in a report that will be provided to PCORI along with a list of attendees. However, PCORI will not see who made comments. Does anyone have any questions? I am now going to ask each of you in turn if you consent. Do you consent to audio-recording of the discussion today? (ask by first name of each person. If anyone says no suggest that we will follow-up by and ask them to leave the call.) If yes, turn on the recorder. Record beginning time. We also have a several patient experts on the call (advance to Slide 5- Welcome ). Would each of you be willing to quickly introduce yourself by telling us your name and these three things about yourself? Let s start with (first name on list). Webinar participants will then introduce themselves by first name and share a few things about who they are. (Example: Hi, my name is Rebecca. I live in Louisville, Kentucky, I had a hip replacement 2 years ago and I enjoy gardening). Where are you from? What joint replacement(s) have you had or are thinking of having? What do you do or enjoy doing? Facilitator will thank each person for sharing and advance to the next slide (Slide 6- Agreements ).

3 Agreements Facilitator will propose a list of guidelines or group agreements for the discussion by saying: To make our discussion go smoothly and allow everyone to share their ideas, we propose the following guidelines or group agreements. Facilitator reads each one and asks if anyone needs clarification on any these or would like to add another one. Take care of yourself & ask for what you need Ask questions (some medical lingo may be unfamiliar) Step up, step back (draw out others ideas) Agree to disagree Acknowledge everyone s experience is different One mic (please mute phone when not speaking) Others? What Do We Know? Registration Results (Slides 7-9) The facilitator will share the deidentified and aggregated results of responses to the pre-webinar registration survey by saying: You all answered a few registration questions when signing up for this webinar. These are the results from all people who have registered for a webinar. Let s look at the information on the next few slides and then talk about them. A total of (N= ) people answered these questions. (advance to Slide 7, 8 & 9- Registration Survey Results ). After presenting the results, the facilitator will ask for reactions and reflections about the findings: What stands out to you about the results? (optional probes) Did anything surprise you? How would you interpret this finding? Are there experiences you ve had that shed light on these findings? What else do you notice that someone else hasn t mentioned already? Facilitator will make a bridging statement to move to the capacity-building research-related educational component of the discussion: Ideally, research helps people make decisions. A lot of research does not do that very well. That s why we need you, because you re decision makers about your own health care. From the survey, the questions patients asked or wished they d asked before surgery are excellent examples of the kind of expertise that you can bring to research. What Can We Do? Research Roles for Patients (Slides 10-14) Facilitator reads the statement at the top of the slide: What matters to you as a patient could become an important research question. Facilitator then asks the discussion question (Slide 10): Thinking about your own joint replacement experience, what decisions do you care (or did you care) most about?

4 (optional probes) What information do you need to make those decisions? (If patients focus primarily on their choice of surgeon/doctor) Deciding on a physician may mean that you are also choosing the type of hospital, the type of surgery and the type of implant device. What could help you make that important decision? What comparisons could be made to help answer that question? What research questions could be asked to help answer that question? Overview of Roles and Activities in Research Facilitator presents slides 11-13: Here are some roles and activities for patients in research that go beyond being a passive human subject or participant in study. Patients can be involved in every phase (slide 11) Phase 1: Before Identifying topics, prioritizing research questions, designing a study, developing study eligibility Phase 2: During Developing surveys and other tools, helping recruit participants, assisting with data analysis, serving as a patient representative Phase 3: After Planning dissemination activities, identifying partner organizations, identifying forums to share findings, binging together patients & stakeholders to discuss As a paradigm or practice, patients as partners in research (slide 12) Could mean involvement in any or all phases of research Includes patients, family members, caregivers Encompasses organizations & stakeholders Helps make research more patient-centered, useful, & trustworthy Leads to integration of research results by the patient & broader healthcare community. Patients play different roles in research (slide 13) Co-Leader: A patient who is a co-principal investigator has ultimate accountability and control over the project. Co-leaders are part of an organization responsible for proposing the research project, designing the study, and meeting all reporting requirements of the research project Staff: A patient who serves as a consultant or staff member works on the design and development of research tools and participates in interpreting and disseminating findings. Advisor: A patient with expertise offers advice and feedback to researchers in the design and implementation of the research. Facilitator says, You can be part of the research process and asks discussion question (slide 14): Thinking about your own experience, what motivates you to be part of research about joint replacement? (optional probes) What would make you feel more motivated or activated (i.e., excited about research and answering questions you have about your own care)?

5 What would help you feel more capable (i.e., ready to participate as partners in research in some of the roles and activities we presented)? Facilitator should then circle back to the pre-webinar registration survey results to let them know how responses such as these may be considered as before research activities. (Example: The fact that they didn t ask questions about the device before surgery, but that they then had questions about their device in retrospect is interesting.) Possible ah-ha moment: Patients and their questions matter and they have already participated in an important part of the research process through the registration survey and this webinar discussion. What s The Next Step? Wrap-Up (Slide 15) Facilitator thanks participants for attending the webinar: Thank you for participating in this discussion! Facilitator presents relevant follow-up information and next steps (slide 15): You will receive a follow-up In-person roundtables in the coming year: New York City Boston Chicago Please contact us with questions or suggestions at or or call us at the Global Healthy Living Foundation at (845) Materials: GoToMeeting Conference call line PowerPoint presentation that includes registration survey results and discussion questions List of participants first names

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