Summarizing Webinar Protocol and Guide for Facilitators

Transcription

1 Summarizing Webinar Protocol and Guide for Facilitators Bringing STakeholders Together for Engagement in Research for the Selection of Arthroplasty Implant Devices (BeTTER SAID) Title: How can patient partners improve joint replacement research? Time: 1 hour and 30 minutes Attendees: 1 Facilitator, 1-2 Additional Staff, 12+ Patient or Research 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 how patient partners improve joint replacement research. We will start in a few minutes. Please call into the conference line. 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. What is BeTTER SAID? Welcome (Slides 1-5) Title Slide (Slide 1) ***Turn on the recorder*** 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 this summary presentation of the BeTTER SAID project and a discussion about how patient partners can improve joint replacement research. This project is a partnership of RAND Corporation with the Global Healthy Living Foundation and its arthritis patient community CreakyJoints and specifically ArthritisPower, a PCORnet patient-powered research network created by CreakyJoints and rheumatology researchers at the University of Alabama at Birmingham. (Advance to Slide 2 Welcome ). Welcome!/Introductions (Slide 2) Facilitator and colleagues will briefly introduce themselves (Slide 2- Welcome ) then state the following: This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (2228-GHLF). Webinar will last about 90 minutes Will be recording the webinar Will not have everyone introduce themselves, however, there will be some time for Q&A during the webinar. Please use the chat window to ask questions at any time during the webinar. (Advance to Slide 3 Agenda ). 1

2 Agenda (Slide 3) Facilitator will briefly present the agenda topics. This call will last for about 90 minutes and will include the following topics about BeTTER SAID (Bringing Stakeholders Together for Engagement in Research for the Selection of Arthroplasty Implant Devices). What is BeTTER SAID? Welcome 5 mins What did we learn? Findings 15 mins How can patient partners improve research? Models 60 mins How can you get involved? Patients + Researchers 5 mins By the end of this webinar, we will leave you with a call to action to engage patients as partners in joint replacement research and we will offer some ideas for doing so. The purpose of this call is to share a summary of our BeTTER SAID project and what we learned, and to make sure that you are aware of the BeTTER SAID cohort of patients who are motivated and prepared to work with you as research partners. Our co-facilitator, Chris Stake, is a member of the BeTTER SAID patient cohort. (Advance to Slide 4 - What is BeTTER SAID? ) What is BeTTER SAID? (Slide 4) BeTTER SAID stands for Bringing Stakeholders Together for Engagement in Research for the Selection of Arthroplasty Implant Devices. CreakyJoints was created to give the community of arthritis patients and their families a voice. Part of that includes getting a wider circle of patients involved in the research that can bring about changes in health care and health outcomes, such as helping patients get optimal treatment to manage arthritis or having the best possible outcomes from their hip or knee joint replacement. From some early discussions with patients and other stakeholders, device selection emerged as a major factor in joint replacement safety. We believe that the choice of which device to use is an important health care decision that can be guided with better evidence. An underlying assumption of this project and this webinar is that patients should be involved as partners in research. It s the right things to do and improves the quality and usefulness of findings from research. (Advance to Slide 5 - We engaged stakeholders in 3 steps ) We engaged stakeholders in 3 steps (Slide 5) Another underlying assumption of this project is that research produces information that helps people (patients and other stakeholders in health care) make decisions. In other words, ideally, research can help people make decisions, but not all research does that very well. In our project, we wanted to do these 3 things in order to build a cohort of trained and activated patient research partners. 2

3 1. Through webinars, we wanted to make sure patients understood how they can play an essential role in all phases of research before, during and after. The message we conveyed was that the decisions that patients find most important can be turned into powerful research questions. 2. Through in-person roundtables, we wanted to help prepare patients to work alongside other stakeholders on a team by conducting some Share the decisions and questions that patients had in a diverse group of stakeholders and engage in multi-stakeholder analysis of a few critical decisions to observe how a decision about which surgeon will perform a joint replacement or which device would be used for the new joint Step 1. Interactive webinars to explore patient decisions and information needs prior to surgery Step 2. In-person roundtables to observe the response of clinicians, health systems leaders, industry to patient decisions and information needs Step 3. Disseminating webinar to share observations with patient ambassadors and other stakeholders What did we learn?-findings (Slides 6-11) (Advance to Slide 6 - What did we learn-findings? ) What did we learn?-findings (Slide 6) We listened closely and collected some information during the process of conducting webinars with patients and then roundtables with patients and other stakeholders. Here s what we learned. People considering joint replacement surgery (Slide 7) Among those participants who indicated that they have not yet had surgery, but are considering it, the great majority of them want: To be informed about the implant device To hold or see a model of the device To learn about risks/benefits of surgery Want to learn about other available devices People who have had surgery (Slide 8) Now notice how different these numbers are among participants who had already had a hip or knee replacement much lower percentages of people who: Were informed about the specific implant device to be used Got to hold or see a model of the device Got to learn about risks/benefits of surgery Got to learn about other available devices Although this was a convenience sample of participants who signed up for our webinars (N= ~60), it nevertheless indicates two things: (1) from the patient perspective, the device replacing their hip or knee is an important decision that they want to know more about and (2) patients expectations for what they want to learn about the device does not match their actual experience when they have surgery. 3

4 Which decisions need more information? (Slide 9) In 16 webinars with 49 patients and caregivers, we asked what decisions were most important to patients related to their arthroplasty (both patients who were considering hip or knee joint replacement or those who had had the procedure). From our webinars with patients and caregivers, eight decisions emerged that were most important to patients when considering a hip or knee joint replacement along with a list factors that people used to make these decisions. 1. Surgery 2. Timing 3. Surgeon 4. Facility 5. Device 6. Approach 7. Other HCPs 8. Other Services Examples of the factors they used included: Current life situation and health status Risks and benefits of having surgery Risks and benefits of NOT having surgery Information provided to patient by doctor or other health care provider (HCP) Alternatives to surgery that they ve considered or tried (physical therapy, injections) Information provided to patient by doctor or other HCP Trust and communication with HCP Firsthand familiarity with the procedure, the facility, the surgeon (e.g., due to working in that setting) Which decisions need more information? DEVICE (Slide 10) The decision about which device to use is an interesting one because patients had a lot of questions about devices, but not a lot of information. For example, patients want to know: How do providers choose devices? What factors do they use to make decisions about devices? What materials are out there for devices? Is there some material that is better for specific situations or people? What device or materials works best or gets the best outcomes for patients? Does the price of a device affect how many surgeons use it for joint replacement? Is the latest device always the best? Why or why not? Stakeholder analysis of DEVICE (Slide 11) During the roundtables, we did a stakeholder analysis exercise using the 7 Ps framework developed by Tom Concannon and colleagues that was published in the Journal of General Internal Medicine under the title, A New Taxonomy for Stakeholder Engagement in Patient-Centered Outcomes Research. * 4

5 The 7Ps framework is used to identify different stakeholder groups that should be included in a health outcomes research project. *Concannon, T. W., Meissner, P., Grunbaum, J. A., McElwee, N., Guise, J.-M., Santa, J., Leslie, L. K. (2012). A New Taxonomy for Stakeholder Engagement in Patient-Centered Outcomes Research. Journal of General Internal Medicine, 27(8), We took different decisions and looked at who is involved and what information each stakeholder group might need to make the decision. In our stakeholder analysis exercise on joint replacement device, participants considered these 2 questions (Who makes the decision about device? Who is affected by the decision?) for the DECISION: Which Device or appliance will be used in joint replacement? Participants realized the providers primarily make the device decision and that makes sense. But they also realized that they are a first order stakeholder affected by the device decision. This makes sense given that faulty devices can end up on market and cause serious adverse events for patients. As many as 200,000 people in the US are walking around with devices that have been recalled. Not all patients who have a faulty device have problems, but some must undergo revision surgery. How can patient partners improve research? Models (Slides 12-32) We invited a couple of friends of CreakyJoints to speak about why it s important to include patients as partners and share models of examples of how this can be done in joint replacement research. Our first presenter is Rachael Fleurence, PhD. Rachael is the former Director of PCORnet, the National Patient-Centered Clinical Research Network, that was created to address an urgent national need to conduct patient-centered outcomes research faster, more efficiently, and at lower cost, by leveraging the power of health data and unique patient partnerships. Rachael is now Executive Director of the National Evaluation System for health Technology (NEST) Coordinating Center, a public-private partnership of the FDA and the device industry, located at MDIC, the Medical Device Innovation Consortium. Dr. Fleurence will: Discuss the launch of NEST and its relevance for the arthroplasty community of stakeholders (e.g., patients, clinicians, researchers, FDA, medical device industry) Describe the importance of bringing patients and other stakeholders together to improve evidence generation in the area of medical devices [Rachael Fleurence presentation] (Slides 13-20) 5

6 Our second presenter is Dr. Susan Goodman, MD, a Rheumatologist at Hospital for Special Surgery (HSS) in New York City. She specializes in treatment of patients with inflammatory arthritis such as rheumatoid arthritis, psoriatic arthritis, and spondylarthritis. Her other area of specialization is in the perioperative care of patients with rheumatic diseases. Research interests have focused on the perioperative outcomes of rheumatic disease patients undergoing arthroplasty. She will talk about her work with Patient Panels for Treatment Guidelines, specifically for medication management for people with inflammatory arthritis who undergo joint replacement surgery. [Susan Goodman presentation] (Slides 21-32) How can you get involved? Patients + Researchers (Slides 33-39) How can you get involved? Patients + Researchers (title slide) (Slide 33) So now that you ve heard about our development of the BeTTER SAID cohort of patient partners for joint replacement research and about a couple of example where patients are vital to research, what are the next steps? Let s recap first. Patients can be partners in research (Slide 34) [Share information on slide.] Our key points overlap with the PCOR Engagement Principles of reciprocal relationships, co-learning, partnership, trust, transparency, honesty. PCORI has engagement rubric with practical guidance to applicants, merit reviewers, awardees, and engagement/program officers on effective engagement in research asks for information about how patients and stakeholder partners will participate in Planning the Study Conducting the Study Disseminating the Study Results PCORI encourages all applicants to outline how patients and other stakeholders will participate as partners in various phases of the proposed research. PCORI expects applicants to consult with patients and other stakeholders on their decisional dilemma and evidence needs or to reference previously documented decisional dilemmas in preparation for applications. PCORI understands that engagement structures and approaches vary widely. Program of Involvement: Guiding Questions (Slide 35) 6

7 The BeTTER SAID cohort of patient partners has been stood up and they are ready. The next step is to get a framework like this set up for your own projects. We want to invite you to comment on how you would do that. The questions on this slide are not meant to be prescriptive. These are 7 questions that researchers need to think through in preparing a proposal (e.g., a PCORI application). This is an unfinished list but is some of the thinking we ve been working on as a team. [walk through the 7 questions and give examples]. 1. How do you establish a distinction between studying patients and involving patients? 2. Why do you involve patients? (e.g., what's the ethical and scientific rationale?) 3. Do you train patients before you get started? If so, why/how? 4. Does your team need training to work with patients as partners? 5. What are specific research activities in which you seek the involvement of patients? (e.g., before, during or after, or across all phases?) 6. At what level of intensity do you involve patients? 7. What are the specifics of how you will interact with stakeholder groups? It would be helpful to get feedback on these, on the appropriateness of these 7 queries. How would you involve stakeholders? (Slide 36) Stakeholders such as patients can be involved in every phase of research but HOW do you involve them? What are the nuts and bolts of the process of engaging stakeholders in each phase? Do you need to engage them one-on-one or as an advisory group or as members of the project leadership team? Will you use s to communicate or do you need to have regular conference calls? 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) Researchers-how to get involved (Slide 37) [Share information on slide.] We have a cohort of patients who are ready to engage as partners in arthroplasty research. Please reach out to us so that we can connect you with patients partners and be a patient organization partner with you on your project. Patients-how to get involved (Slide 38) [Share information on slide.] 7

8 We have ongoing training and discussions with patients to keep them engaged in research. For example, our Patient Partners in Research group and our patient-powered research network, ArthritisPower to engage patients and collect patient-reported outcome measures and medication data (and other information) using a smartphone app. Thank you for participating in this discussion! (Slide 39) Facilitator thanks participants for attending the webinar: Thank you for participating in this discussion! Facilitator presents relevant follow-up information We recorded this webinar today and will make it available on our CreakyJoints website. You will receive a follow-up with information and link once it s posted. Please share with people you know. We look forward to hearing from you to connect patient research partners with joint replacement research projects. Materials: GoToMeeting Conference call line PowerPoint presentation 8