Address the Safety of Joint Replacement Research into the safety of - - PowerPoint PPT Presentation

“Research into the safety of artificial joints would be BeTTER SAID if patients are involved.”

Patients & Researchers Partnering to Address the Safety of Joint Replacement

Agenda

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

Bringing STakeholders Together for Engagement in Research for the Selection of Arthroplasty Implant Devices (BeTTER SAID)

Tom Concannon

RAND Corporation

Ben Nowell

Global Healthy Living Foundation CreakyJoints

Shilpa Venkatachalam

Global Healthy Living Foundation CreakyJoints

Welcome!

This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (2228-GHLF).

Consent

 Information you provide will be used for

research purposes only.

 Global Healthy Living Foundation,

CreakyJoints and RAND will keep your identity confidential and will not attribute comments to specific individuals.

 Please do not repeat anything you hear in a

way that is attributable to other people.

 The discussion will be audio recorded to create

de-identified transcripts. The original audio recordings will be destroyed.

Welcome!

Where are you from? What joint replacement(s) have you had or are thinking of

having?

What do you do?

Thank you for joining the discussion.

Agreements

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?

Among people who have had hip and/or knee replacement surgery…

Percentage who were informed about specific implant device 63% Percentage who saw or held the device 34% Percentage who learned about the risks and benefits associated with surgery 55% Percentage who learned about other devices 18%

REGISTRATION SURVEY RESULTS

Among people who are candidates or are considering having surgery…

Percentage who want to be informed about the specific implant device 88% Percentage who want to hold or see a model of their device 71% Percentage interested to learn about the risks and benefits associated with surgery 88% Percentage who want to learn about other existing devices

• n the market

88%

REGISTRATION SURVEY RESULTS

 Questions patients asked before surgery:

 How do I decide what kind of implant device to use?  What material is the implant device made of? How big is [it]?  What happens if this device fails?  How long will it last? Will it need to be replaced eventually?  What will be my range of motion?  Can it cause infection to other joints?

 Questions patients wished they’d asked before surgery:

 Are there different types of implants to chose from?  What metal is the implant device made from?  What happens if my body rejects the implant?  How long is the average life span of the implant?  Will my knees ever feel like normal again?  Will the implant device work for patients with RA?  I have been diagnosed with lupus. Do I have any additional risk factors?

REGISTRATION SURVEY RESULTS

What matters to you as a patient could become an important research question

Think about your own joint replacement

experience…

What decisions do you care most about?

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, bringing together patients & stakeholders to discuss

Patients can be involved in every phase

Patients as PARTNERS IN RESEARCH

Could mean involvement in any or all phases of research Includes patients, family members, caregivers Encompasses

• rganizations

& stakeholders

Helps make research more patient-centered, useful, & trustworthy

Leads to integration of research results by the patient & broader healthcare community

Co-Leader

• A patient who is a co-principal investigator has ultimate accountability and control
• ver the project. Co-leaders are part of an organization responsible for proposing the

research, designing the study, and meeting all reporting requirements of the project.

Staff

• A patient who serves as a consultant / staff member works on 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.

Patients play different roles in research

You can be part of the research process Think about your own experience…

What motivates you to be part of research about joint replacement?

Thank you for participating in this discussion!

You will receive a follow-up email In-person roundtables in the coming year:

New York City Boston Chicago

Please contact us with questions or suggestions at

bnowell@ghlf.org or svenky@ghlf.org or call us at the Global Healthy Living Foundation at (845) 348-0400.