Welcome to the 3CTN PPI News page!
All 3CTN Stakeholders interested in our PPI program can check this page for regular updates and activities from across the Network.
OPEN CALL FOR PPI NEWS Want to share a great PPI story with us? Have a great Lay Representative at your centre that we can feature? How has PPI impacted your clinical trial activities? The 3CTN Coordinating Centre wants to hear from you – send us your stories and we will feature them here for all Network stakeholders to see what great PPI related activities are happening at your centre. Send your PPI News ideas to: info3ctn.ca
- The PPI Reference Tool: This new tool has been added to the PPI Toolkit for Sites and is a “Cole’s notes” walkthrough of all the steps involved in developing and implementing a PPI role on local institutional committees. This tool also acts as across reference guide between the “PPI Framework” and the 3CTN PPI Guide so that site staff can quickly navigate relevant document sections that may help with each step of implementing a PPI role.
- The Ask Me Ambassador PPI Role: Sites that are currently in the process of their local “Ask Me” roll out may wish to add the Ask Me Ambassador role to the roll out plan. This PPI role is covered in detail as part of the new PPI Reference Tool and represents a great opportunity for sites to involve local patients that may wish to act as trial advocates or peer mentors for new patients that are considering trial participation.
- Increase the number of adults and children enrolling in academic clinical trials;
- Increase the number of centres offering academic clinical trials across the country;
- Improve the efficiency and effectiveness of the management of clinical trials to complete trials in a timely manner
- Streamline processes such as training of trial personnel, ethics review and specimen collection and storage;
- Ensure sites are conducting studies that meet the priorities of Canadian patients;
- Demonstrate the positive impact of this work on the Canadian health system.
- The addition of PPI/PE can help make healthcare research accessible to general population;
- To achieve a meaningful PPI interaction, there must be careful thought given to the role and its mandate. Ultimately the healthcare research industry has evolved past the point where “tokenistic” PPI/PE is adequate to serve the needs of the industry;
- A key characteristic of a successful PPI interaction is the understanding that all voices and experiences bring value to the table in healthcare research planning and research priority setting.
- Educate all 3CTN Stakeholders, Lay Representatives and scientific/site staff alike, about PPI and its potential benefits with the 3CTN framework;
- Provide a “road map” for 3CTN PPI and thereby stimulate the incorporation of PPI throughout all levels of the Network;
- Provide the necessary tools and training for Lay Representatives and site staff.
The 3CTN Patient and Public Involvement Guide: A Comprehensive Resource for 3CTN Sites and Beyond (April 2018)
3CTN is committed to supporting and increasing Patient and Public Involvement (PPI) capacity across the Canadian cancer research environment by providing information and tools to enable site staff to preform PPI activities.
One important aspect of increasing PPI across the Network is to support individual sites so they can understand and adopt PPI activities that fit their local needs. Sites that are interested in understanding PPI “best practices” can use the comprehensive 3CTN Guide to Patient and Public Involvement. Sites will find the appendices and tools at the end of the Guide particularly useful as a starting point to see what steps are needed to engage local Lay Representatives.
Recently, the 3CTN Coordinating Centre staff spoke with Dawn Richards at Clinical Trials Ontario (CTO), who assessed the 3CTN PPI Guide as part of a full environmental scan on Lay Representation information and documents in Canada. “The 3CTN Guide is a very thorough walk-through of some background information regarding the benefits of PPI,” Dawn remarked. Dawn also mentioned that “the tools and templates at the back of the Guide were very helpful” to kick off some of her own Patient Engagement tasks at CTO.
Aside from the PPI Guide, Network sites are encouraged to access the dedicated “Patient/Public" tab on the 3CTN website, which is home to items like the “PPI News Page” and the PPI tool kits, one for Lay Representatives and one for site staff
PPI Implementation Tip: (October 2017)
Once you have a well-written Patient and Public Involvement (PPI) job description, the next step is to match the requirements of the committee or project with the interests and background of the lay representative. Post the job advertisement on your organization’s website and promote it using social media or word-of-mouth. Former patients and research participants may be interested in participating as a lay representative. Ask your local Patient and Family Advisory Committee for assistance. For more details, see 3CTN Guide to PPI, page 27.
PPI in Focus: (March 2017)
No longer a notion, Patient and Public Involvement (PPI) has become an integral part of the 3CTN Network, helping to improve the clinical trials landscape across Canada. Involvement of PPI is dependent on many variables and looks very different from one trial centre to another. Factors such as population, size of site and perceived value, just to name a few, can affect the outcome of success. One factor that ties the “concept” of successful PPI together is that a very high percentage of trial centres across Canada have some level of PPI embedded within their organization.
An excellent article about how PPI can work is featured in a video by CTV, about the Ask Me Campaign in London, Ontario!
PPI in Focus: Patient Advisory Group at Cancer Care Manitoba (February 2017)
In the December 3CTN newsletter, CancerCare Manitoba’s new Clinical Trial Focus Group was featured as a valuable, innovative way to engage patients’ ideas, concerns, and wishes in the site’s decision making about how to address any barriers for patients or caregivers, how to increase patient awareness of clinical trials, and how to make the language used in promotional material more appealing and easier to understand for patients. Since December, this group of six patients led by Clinical Trial Recruitment, Specialist Gina Garrett and attended by Clinical Trials Unit Manager, Kathryn Dyck and Senior Research Nurse, Barb Ammeter has had two meetings. These meetings took place on December 8, 2016, and February 2, 2017, with the third meeting planned for April 6, 2017. The Coordinating Centre contacted Kathryn Dyck to share some exciting news about the progress the group has made to date
Having a management background, and no previous experience from direct contact with the cancer patients, Kathryn was apprehensive about the group’s initial meeting. Her apprehension was related to being unsure how the work of the Clinical Trials Unit was regarded by the patients, and if their emotional state after participating in the clinical trials reflected any frustration with the existing processes. To Kathryn’s delight, her apprehension rapidly diminished by the end of the first meeting, once patients confirmed they were eager to contribute to the advancement of the activities of the Clinical Trials Unit. Realizing that the patients really wanted to be part of this group, and provide their feedback, Kathryn quickly envisioned the potential positive impact the “patient voice” could have on promoting clinical trials. During the first meeting the team assessed the degree of general information the patients had about the clinical trials, and what information they wished they had access to prior to going into their clinical trial treatments. After the patients indicated the clinical trial information included in the package given to all new patients coming to the center was minimal, the group agreed that additional information specific to clinical trials is needed.
The second group meeting was focused on obtaining patient feedback about the promotional materials such as a planned clinical trial poster to be placed in every clinic exam room, an informational pamphlet for new patients, and the clinical trials section of the CancerCare Manitoba website. Participants felt strongly that the “It Starts With Me” video, currently hidden away in the related links section of the website, should be more visible and brought to the forefront. Promotional materials were deemed to benefit from more photos featuring babies and younger children along with older people to emphasize that clinical trials efforts will benefit future generations.
For the third meeting in April, the group is planning to review and provide feedback on the patient displays that are being designed for International Clinical Trials Day in May. “Obtaining quotes from the patients based on their participation in the clinical trials and including ‘good news stories’ is important going forward,” Kathryn says, “because those are the stories that will resonate with other patients considering participation in the clinical trials”. Besides sending thank you letters to the patients at the conclusion of the sessions in April, Kathryn says that showing them the actual changes that were made as a result of their participation in the group will bring tangible and appreciable reward to them.
The 3CTN Coordinating Centre is excited, and looks forward to hearing more about this PPI project at CancerCare Manitoba, and the results of their third planned meeting in April. It is impressive to hear about the successes of a unique approach to PPI like this, and to hear about the way it has allowed rewarding interactions for all of the staff, and patient participants involved.
Other PPI Stories
"It's time to start talking about clinical trials" - OICR News, May 2016