What gynecologic cancer patients want to know about gynecologic cancer research: Disseminating timely research evidence through recorded conversations between patients and research experts

Co-lead:

  • Nicole Keay
Team members:

  • Nicole Prestley
    Women’s Health Research Institute
  • Lori Brotto
    Women’s Health Research Institute
  • Helena Abreu do Valle
    UBC
  • David Huntsman
    UBC
  • Lien Hoang
    UBC
  • Jessica McAlpine
    UBC
  • Anna Tinker
    UBC
  • Siv Klausen
    Patient partner
  • Debra Walker
    Patient partner
  • Rose Au-Yeung
    Patient partner
  • Justine Greene
    General public
  • Samyak Sah
    SFU
  • Gina Ogilvie
    UBC
  • Laurie Smith
    UBC
  • Stephanie Lam
    UBC
  • Gavin Stuart
    UBC

Patients with gynecologic cancer have articulated a strong desire for accessible research evidence. We are proposing to work with patients to develop five short videos on gynecologic cancer covering topics in prevention, diagnosis, treatment and living well with, and beyond, gynecologic cancer. These videos will be ‘hosted’ by the patient partner, and will consist of recorded, structured conversations (taking place virtually using zoom) between a gynecologic cancer patient and a gynecologic research expert. Where necessary, additional information will be interspersed using PowerPoint slides and infographics to improve clarity and maximize evidence sharing. By having our patient partners ‘host’ these conversations, it will ensure that content is relevant to patients. We hope that these videos will improve the lives of gynecologic cancer patients in BC by:

  1. Making it easy for patients to access information on the research happening here in BC that is directly relevant to their cancer care and journey.
  2. 2) Increasing awareness of opportunities to participate in gynecologic cancer research in BC.
  3. Providing easy access to the stories and experiences of other gynecologic cancer patients.

Publication: Outcomes From Opportunistic Salpingectomy for Ovarian Cancer Prevention

Video: Beyond the Stories – Opportunistic Salpingectomy as a Strategy for Ovarian Cancer Prevention

 

CoBrA Community Brain Art initiative: Co-created brain health promotion with the Downtown Eastside community

Co-lead:

  • Christy Sutherland
    UBC

Team members: 

  • William Honer
    UBC
  • Skye Barbic
    UBC
  • Sari Raber
    Kilala Lelum
  • Andrea Jones
    UBC
  • Melissa Woodward
    UBC
  • Jacob Stubbs
    UBC
  • Lianne Cho
    UBC
  • Christopher Siu
    UBC
  • Will Panenka
    UBC

Brain disorders are underappreciated, modifiable drivers of daily challenges. Our team’s research includes the ten-year observational Hotel Study, which engages Downtown Eastside (DTES) residents affected by precarious housing, and has found high rates and significant consequences of traumatic brain injury, stroke and mental illness. To engage the community during the COVID-19 pandemic, innovative knowledge dissemination activities are needed. The two-part Community Brain Art (CoBrA) initiative is co-created with residents, healthcare providers and researchers in the DTES. CoBrA aims to share local brain health research and community resources with DTES residents. First, we will co-design art kits with knowledge users, containing art supplies and brain health infographics. These kits will be distributed to residents to facilitate dialogue and visual expression of their experiences with brain wellness and injury. Submitted art and health resources will be shared on our website. Second, we will co-produce a mural with local artists to convey brain health recommendations. Reach and effectiveness will be assessed by kit participation, website access and pre- and post-engagement surveys by text message and peer-facilitated sessions.

Utilizing a multimodal optical device to detect cancer

Two out of every five individuals will develop cancer during their lifetime. My research program focuses on cancer prevention and diagnosis, using skin cancer as an initial platform. Skin cancer accounts for two thirds of all cancer cases and is an easily accessible organ to study using optical devices. Biopsies are typically used to detect skin cancers. Disadvantages of skin biopsies include possible disfigurement and complications, lengthy processing time, and occasionally inaccurate or inconclusive results. As well in some patients that are at high risk, taking multiple biopsies may not be practical and is costly. In this proposal, we will determine if an optical device combining different optical methods can readily and accurately detect skin cancer.

Ultimately, we expect this optic device to provide a noninvasive and instantaneous diagnosis that would be available to the patient and clinician at the bedside. This novel method of combining different spectroscopy methods to be able to collectively evaluate skin lesions and help in the diagnosis of skin cancer would be a significant achievement in the screening of cancer. Early and improved detection using a noninvasive method would help to improve morbidity and mortality in those affected with cancer. 

A culturally safe pathway for scaling up a patient-centred mHealth technology in northern BC (WelTel Haida Gwaii)

Co-leads:

Executive sponsor:

  • Ciro Panessa
    Northern Health

Rural and remote areas in northern BC experience a greater burden of chronic disease than the rest of the province. The management of chronic disease in primary care settings on Haida Gwaii, in particular, is limited by remoteness and the lack of continuity in outpatient care. The delivery of care to diverse populations in northern BC, including First Nations, requires innovative approaches due to constraints on health system resources.

WelTel is an evidence-based digital health intervention (EBI) that links patients and care providers via text messaging to enhance the timeliness, access to, and quality of chronic disease care. With funding from Doctors of BC, WelTel currently serves 120 patients at Xaayda Gwaay Ngaaysdll Naay/Haida Gwaii Hospital & Health Centre (XGNN). Feedback has been positive on its usefulness, but it has not yet been adopted widely and equitably for patients with chronic disease.

Scaling up WelTel could improve chronic disease management in rural and remote areas of northern BC, address BC health system priorities and advance inter-organizational and patient-centred care. Establishing a process for implementing health innovations that are culturally appropriate will speed up adoption of EBIs in the future.

The goals of this research are to enroll a majority of chronic disease patients in WelTel at XGNN, to expand across primary care on Haida Gwaii, and serve as a model for rural BC. This will include conducting rigorous implementation science research, and a continuation of existing work to construct a mobile health EBI evaluation tool. This will be modified from the Consolidated Framework for Implementation Research (mCFIR) tool which identifies facilitators and barriers associated with expansion to ensure equitable access for all patients.

The mCFIR tool will be complemented with the He Pikinga Waiora Implementation Framework (HPWIF), a community-based participatory framework rooted in Indigenous self-determination. HPWIF will explore critical cultural intricacies and direct the ethical conduct of research in these communities.

This research is poised to explore the complexities of providing care in Haida Gwaii and establish a culturally safe pathway for implementation of EBIs within the community and in similar settings.

Novel infection resistant coating for indwelling urinary devices

Urinary catheters are polymer tubes inserted into the bladder to drain urine. Over 25% of patients in hospital are fitted with a catheter during their stay. These tubes are a major cause of infection in hospitalized patients and result in longer hospital stays with skyrocketing health care costs and may result in death. In fact, infections acquired in hospitals are the fourth leading cause of death in hospitalized patients. 

Currently, antibiotics are our only method of attempting to deal with these infections, but they do not work well. Bacteria form large communities, known as biofilms, on the surface of the catheter, which can render antibiotics ineffective. Additionally, bacteria have developed ways to inactivate antibiotics and become resistant, making them difficult to kill.

Dr. Lange has developed a breakthrough technology based on a special coating for catheters. The coating is inspired by nature—it’s very similar to what marine mussels use to attach to surfaces—and prevents bacteria from attaching to the catheter surface without killing the bacteria, which would induce resistance. Instead, by preventing bacteria from attaching to surfaces, we leave them exposed for our immune system to kill.

Dr. Lange’s preliminary studies have shown that this new coating prevents the attachment of different types of bacteria to the catheter surface in test tubes and in a realistic urinary environment in animal models. The coating doesn’t break down over time and can be used to cover many different types of materials. 

The next steps for this technology will be producing catheters with this coating, including testing its effectiveness over long periods of time in larger animals, ensuring it cannot be rubbed off, and that it stays active under conditions it would face in medical environments. Although this project is specifically looking at catheter infections, the data that Dr. Lange will generate will provide a general method for preventing infections associated with other medical devices, another major problem in hospitals.

Custom platform for preoperative planning of complex head and neck reconstruction

Advanced head and neck cancers involving facial bone often require aggressive removal of diseased bone. Reconstruction of the bone is typically done by cutting and reshaping patient donor bone. This process involves is complex, since the accuracy of the reconstruction significantly impacts cosmetic and functional outcomes. Doing this during surgery is challenging, time-consuming and can be improved with better planning before surgery. 

One method of pre-operative planning is to use patient imaging data to perform virtual reconstructions and design 3-D printed cutting guides for use during surgery. Currently, the only way to obtain such guides is through a third party and costs between $2000 – $6000 per case. However, this process has a significant turnaround time and surgeons have limited input on how the actual guides are designed. 

My group has developed a software that makes the pre-operative process fast, simple and effective. We currently have the capacity to plan mandible (lower jaw) reconstructions with the fibula (lower leg) and are now validating the process through a clinical trial. We hope to extend the software capability to other surgeries and conduct research to generate supporting evidence.

Smart Text Analytic Tools (STAT) for analysis of patient-centred communications to strengthen health systems in BC

Healthcare stakeholders, including health authorities, facilities, pharmaceutical companies and insurers are increasingly acknowledging the importance of big data to enhance understanding of health behaviours and health systems. Existing analytic tools available to navigate the volume of diverse data types at a frequency that can match the speed at which data is generated are in early stages of development, and often lack validation due to limited access to health data. The ability of healthcare stakeholders to make sense of this valuable data is restricted by a lack of capacity and user-friendly analytic tools. 

Dr. Lester leads the UBC mobile health (mHealth) research team, which has been developing a set of smart-text-analytic-tools (STAT) to analyze patient and care provider communication data in the form of open natural language text. The WelTel digital health platform was created by Dr. Lester and has been tested in a diversity of geographic (Kenya, Canada, USA, South Africa) and health settings (HIV, TB, Asthma, maternal and child health) since 2005. The result of twelve years of mHealth research is a dataset consisting of hundreds of thousands of text messages sent by patients and providers. Topics of discussion include advice related to medication side effects, information requests, and the need for access to psychosocial and logistical support services. This data has the potential to identify outpatient self-reported priorities over time, informing patient-centered improvements in health system responsiveness and preparedness. 

The UBC mHealth research group will further develop STAT into a minimum viable product  that can analyze a variety of open natural language text data using natural language processing. This tool will allow both public health systems and private enterprise to streamline approaches to analyzing large volumes of text-based data.

Development of a novel organ preservation solution in transplantation

There is a need to improve donor organ preservation strategies to meet donor organ requirements for transplantation. Strategies such as cold flushing and organ preservation solutions are common practices to mitigate organ damage incurred during the transplant procurement, transport and implantation processes, but these solutions can be inadequate for marginal or extended criteria donors (ECD) that are being used in response to increased demand. New organ preservation solutions that are more effective in protecting donor organs, particularly from ECD, are required to fill this gap.

To address this unmet need, Dr. Du’s lab is developing new organ preservation solutions using a novel hyperbranced polyglycerol (HPG). Proof-of-principle  studies using cell cultures and rodent transplant models have shown that this HPG organ preservation solution performs better than conventional solutions in the cold preservation of organs and human cells. A patent application for the technology was granted in May 2015.

Dr. Du’s technology has garnered interest from top companies and key opinion leaders in the transplantation field. To sufficiently validate and de-risk the technology, enabling him to attract industrial interest, Dr. Du will compare the efficacy of HPG organ preservation solution with conventional solutions in donor kidney preservation with a non-human primate model. If the HPG solution performs adequately, it will lead to a clinical trial. 

The success of this technology could lead to a needed increase in the number of organ transplantations for British Columbians who need them.

Health related quality of life following road trauma: An emergency department inception cohort study

Each year in Canada, road trauma causes over 2,000 deaths and 10,000 serious injuries. Disability after an injury is a major public health concern, but the long term health outcome after road trauma is poorly investigated and based mostly on older research that does not reflect modern vehicle safety features or modern medical treatment. In addition, there is almost no research that helps health care providers know which patients are most likely to have a bad outcome following a crash, making it difficult to provide them with the care they require. For policy makers, it is important to know the health care costs and lost productivity that results from road trauma, but this information has not been studied. My study will provide this missing information.

My team will interview patients who visit an emergency department after a traffic crash, including pedestrians, cyclists, and motorists. We will ask about their general health before the crash, the injuries they had from the crash, and other details of the crash. Repeat interviews at 2, 4, 6, and 12 months will ask about problems they had since the crash, including pain, ability to go about their usual activities, and return to work. We will also ask about the medical care they required after the crash.

This study will help doctors and nurses know how quickly people recover from their injuries after a crash and which patients are likely to have long term health problems. It will also describe the medical treatment that these patients require and how much work they miss. This information will give a better estimate of the true cost of road trauma, and may help policy makers decide how much funding to devote to crash prevention programs or to treatment programs for crash victims.

Implementing concussion return to activity guidelines in primary care

Throughout the history of medicine, patients who had a disease that was poorly understood were advised to rest. As scientists and doctors learned more, early mobilization and active therapies (e.g., exercise) gradually replaced rest as the conventional treatment for a variety of medical conditions, such as chronic fatigue, whiplash, stroke, low back pain, and cardiac arrest. We have now reached this same juncture for concussion care. The proposed project aims to figure out how to support doctors in implementing new science-informed return to activity guidelines for concussion.

By way of background, concussions (also known as mild traumatic brain injuries) are very common, affecting more than 20,000 people each year in British Columbia's lower mainland alone. Concussions have been historically treated with rest. An explosion of concussion research over the past decade has led to several important insights. One such insight is that resting for more than a few days does not speed up recovery, and in fact, may cause harm (for example, lead to social isolation and depression). There is also emerging evidence that exercise is an effective treatment. Guidelines for clinical care prepared by Canadian and international concussion experts now emphasize that patients should gradually return to activity (e.g., school, work, recreation) soon after injury, as tolerated. Nevertheless, rest remains the most common treatment prescribed by doctors. It is promoted in pamphlets and websites designed to educate patients about their injury.

The goal of the proposed research is to bridge the gap between concussion science and clinical care, and study how effective this knowledge translation effort is. We focus on family doctors because they are best positioned to counsel patients about returning to activity after concussion. We have assembled a package of knowledge translation strategies based on behaviour change theory, prior research on how to best implement new clinical care guidelines, and input from the kind of doctors and patients who could most benefit from this knowledge. The study plan involves learning about doctors' behaviour through an online survey tool each time they see a patient with a concussion, and measuring patient outcomes through telephone-based assessments. We will measure changes in how doctors manage concussions and whether those changes result in corresponding improvements in how quickly patients recover from a concussion.