A research project looking for patient partners

[Annette McKinnon]

This team is applying to CIHR for funding for this project. They have been working on the idea for quite a while on their own, and now see the need for collaborators. I volunteered to post this here. If you are interested the person to contact is Lori Letts. In the spirit of being helpful I agreed to meet them by phone next week and they would be happy to talk to more people than me.

No one has yet mentioned compensation.

It sounds interesting to me since it concerns self-management, and also the help of OTs and PTs to get through the day to day slog of chronic disease.

Annette

Project Title: Rehabilitation self-management strategies for people with chronic conditions using a web-based app: A community-based randomized controlled trial

Co-Principal Investigators: Julie Richardson (jrichard@mcmaster.ca) & Lori Letts (lettsl@mcmaster.ca)

Project Summary

Background: The global rise in chronic conditions and aging is associated with increased disability. Physiotherapists (PTs) and occupational therapists (OTs) can mitigate resulting health care system burden with expertise in optimizing function. Rehabilitation self-management strategies assist people with chronic conditions to adjust and manage their daily functioning. Interventions delivered using technology have the potential to increase the accessibility, availability and affordability of rehabilitation self-management supports. Iamable is an evidence- and web-based app developed and tested by rehabilitation researchers. For this app to have a broad impact, it needs to be assessed within a community context, in which persons with chronic conditions can access and independently direct its use.

Goals, Methods, Approach: We plan a fully powered RCT to examine whether community dwelling adults 45-70 years with at least one chronic condition who receive access to the Iamable app over 6 months show greater improvement in self-reported function compared to persons with a chronic condition(s) who will receive web-based information about general health on four occasions. Secondary outcomes include quality of life, life space mobility, self-reported walking speed, participation, self management, pain, depression, health service utilization, gait efficacy and number of falls. Assessments will be completed at baseline, 6-and 12-months follow-up. Participants (N=200) will be recruited through social media, seniors’ recreation centres, the YMCA, and newspaper advertisements in London, Hamilton, Kingston, and Halifax. Intervention: The Iamable app provides rehabilitation self-management strategies in the areas of exercise, fall prevention, fatigue management, pain management, physical activity, and stress management. Users are prompted to set goals using the Patient-Specific Functional Scale, then select relevant modules. They complete a self-assessment for each module and receive a tailored recommendation that guides them to access the most relevant content. Intervention group participants will have access to 3 therapist consultations through the “Ask a therapist” app feature. We will organize an expert panel of users, therapists, and app developers to optimize adoption and sustained use of Iamable.

Research Team: Richardson (Nominated Principal Applicant) and Letts (Principal Applicant) have collaborated for over 15 years in chronic disease self-management research, incorporating technological innovations like patient health records, electronic self-monitoring, and web-based apps. Richardson has led numerous randomized trials. Letts has expertise in stakeholder engagement. Co-investigators at each site will support participant recruitment and intervention delivery. All are rehabilitation researchers with expertise in chronic disease management; the team includes early career researchers and more senior mentors. Patient advisors will support recruitment, and integrated and end-of-grant knowledge translation. The team includes an expert in mobile app development and a statistician.

Expected Outcomes: This research has the potential to demonstrate the contribution a web-based app can make to support function and well-being of people with chronic conditions. Iamable could become a resource for primary care teams to recommend to patients with chronic conditions who may benefit from a self-directed intervention to support their self-management.

Lay Summary

Title: Sharing rehabilitation strategies to support people with chronic conditions:

Evaluating a web-based app

Background: There are increasing numbers of people with chronic conditions. Physiotherapists and occupational therapists can provide strategies to support people’s ability to manage these conditions. We have developed a web-based app called Iamable, to share evidence-based rehabilitation strategies with people with chronic conditions. Our project will test this app’s effectiveness.

Goals, Methods, Approach: We will run a randomized controlled trial in which we offer people in the intervention group the chance to access and use the Iamable app for 6 months. We will offer people in the comparison group access to general health information through web-based links. We will recruit 200 people between the ages of 45 and 70 with at least one chronic condition; we will advertise in four communities (Hamilton, Kingston, Halifax and London). We will use patient-reported measures to determine if the people in the intervention group experience better function; we will also measure quality of life, life space mobility, self-reported walking speed, participation, self management, pain, depression, health service utilization, gait efficacy and number of falls. We will measure these outcomes at baseline, 6 months and 12 months. We will involve patients, therapists, and app developers to determine how best to implement the app for adoption and sustained use.

Research Team: Our research team is led by researchers with experience in rehabilitation and chronic disease management, including testing innovations using technology. We will involve patient advisors to support the project, along with co-investigators with needed expertise in statistics, technology, and rehabilitation research.

Expected Outcomes: This research has potential to demonstrate how a web-based app can support well-being of people with chronic conditions. Iamable could become a resource for primary care teams to recommend to patients who may benefit from an inte

[MIchael Liddell]

I put my name forward, just waiting to hear back to see if they are interested in me. Compensation would be good and I hope there is a lot for patient partners to do.

[Annette McKinnon]

Thanks Michael
I talked to Julie and Lori this morning and they are planning to have patient compensation written into the application.
More info to come. They were delighted to have some responses.

Self management has always been interesting to me. I hope the app is a good one.

Annette

[MIchael Liddell]

Hi Annette I am meeting with Lori via zoom this week. Thanks for putting it out there the importance and benefits of using patient partners.