The ePRO team has been working closely with our partners at the Family Health Teams over the past few weeks to recruit patients to our study. We started with Recruitment Kick-Off meetings with our sites to identify the recruitment strategy that works best for them and their patients. Our site leads and their teams have been working diligently identifying eligible patients from their EMRs and then engaging in first contact. We’re already getting some great buzz amongst patients at some sites and we have a great team of Coordinators, Assistants and Trainees who are contacting individuals to tell them all about ePRO.
A key learning for us in this process is the challenge in identifying older adults with complex care needs across diverse Family Health Teams. The challenge of identifying complex care patients is a pervasive issue not only in research, but also in care delivery as evidenced by the challenges experienced by Ontario’s Health Links in identifying a similar patient population. In their article in Health Affairs, Colbert and Ganguli (2016) recommend a hybrid approach to identifying patients with complex care needs, which includes using data, as well as provider AND patient insights. Provider and patient insight is shown to be an effective method of patient identification, as these individuals offer insights that cannot be captured with big data.
For the ePRO trial we have adopted this recommended hybrid approach, starting with a standardized set of eligibility criteria we use to first identify patients in practice EMRs. However, data from one EMR to the next can look quite different, which limits how granular we can be with our searches. We thus begin with a broader search for patients 60 and over, with 2 or more chronic conditions, and 10 or more visits to the practice in the previous 12 months. Once searches are extracted, the providers in the study look over lists to ensure the patients on the list do indeed represent an individual with complex care needs. We also include the opportunity for patient self-identification using things like posters to inform patients and family caregivers.
We are excited to be moving along with recruitment towards our study start date of October 1st 2017.
The ePRO team attended the Clinical Trials Ontario (CTO) conference in Toronto, on March 8-9, 2017. Dr. Carolyn Steele Gray, principal investigator, was a member on the panel session entitled, “Patient engagement by design in clinical trials and research: community building and the integration of patient perspectives in the design, implementation and evaluation of research.”
Dr. Steele Gray shared our experiences, perspectives and insights on the innovative approach we used to engage patients, caregivers, physicians and other healthcare professionals in the development and evaluation of the ePRO mobile application and portal (ePRO tool). Patient, caregiver and healthcare provider engagement has been an integral part of every stage of the process from design to evaluation of the ePRO mobile application and portal. In phase 1 - needs assessment, we conducted patient and caregiver focus groups as well as interviews with healthcare providers and experts. In phase 2 - tool development, we used working groups comprised of patients and caregivers as well as providers and experts. In phase 3 - usability pilot, we used surveys to get feedback from patients and providers. In phase 4 - exploratory trial, we interviewed both patients and providers following a 4 month trial exploring the impact and implementation of the tool. We are currently in phase 5 which is a full evaluation, scale and spread of the ePRO tool. In this phase we will continue to engage patients and providers through focus groups and interviews as well as ongoing relationship building with providers and staff at the participating Family Health Teams.
Through patient and provider engagement, our goal is to ensure that the ePRO tool is both useful and meaningful to patients and their providers as they continue to work together to manage complex health conditions. Thank you to all those who have expressed interest in the ePRO tool; please feel free to contact us through this website and stay tuned for updates.