Using Technology to Teach Coping: Interview with Reimagine CEO Steve Robinson

Participants in the program come together in Virtual Training Groups either via phone or video conference (their choice) and are guided through a nine-week coping skills training course by a specially-trained social worker – all from the comfort of their own home. Each session lasts one hour and fifteen minutes and is a highly structured, solution-focused, psycho-educational experience that teaches patients concrete tools for living fully in the presence of illness and empowers them to become proactive in navigating the cancer journey.

In a clinical trial at the Duke Comprehensive Cancer Center in 2008 patients who participated in an earlier, face-to-face version of the program (called Pathfinders) perceived their quality-of-life as improved across a range of symptoms including distress, despair, helplessness, hopelessness and fatigue – in spite of the fact that their disease was progressing. Pillars4Life takes the same standardized curriculum and teaches it in Virtual Training Groups giving patients the added benefit of broadening their network of support while learning the powerful skills of the program.

We had a chance to speak to Reimagine CEO Steve Robinson to discuss this program:

 

Ravi Parikh, Medgadget: Tell us briefly about Reimagine and Pillars4Life, and what is the need.

Steve Robinson, Reimagine: Reimagine focuses on the other half of cancer care by providing access to tools that address the social and emotional aspects to complement traditional medical care. Studies have shown that fewer than 3 percent of cancer patients in the U.S. have access to this type of support and nearly 1.4 million cancer survivors have poor mental-health related quality of life.

Reimagine uses a distance learning model to offer accessible, cost-effective, life-affirming tools for people living with cancer and their loved ones.  The three key components, which have been shown to help patients and caregivers thrive in the face of disease, include:

  • A structured, evidenced -based curriculum, called Pillars4Life, to teach patients and their loved ones coping skills to help improve their quality of life
  • An online community to help patients and caregivers stay in contact with peers, guides and experts
  • Trusted information and access to experts that have been curated by Reimagine

Reimagine is dedicated to improving the quality-of-life of patients and their families by helping them thrive in the face of cancer.

 

MedgadgetWhat patient population are you specifically looking to target with this intervention?

Robinson: Reimagine is a company dedicated to improving the quality-of-life of cancer patients and their families. Reimagine believes when both aspects of care are addressed equally, patients and families dealing with cancer can  truly improve their quality of life.

 

MedgadgetExplain to us the rationale behind putting these sessions on teleconference and videoconference?

Robinson: We’ve heard from medical professionals that there is a significant need there to complement traditional medical practiceWe are leveraging distance learning technology and social media to help deliver these services to people who don’t have access to it right nowWe believe that everyone affected by cancer can benefit from Reimagine.

Reimagine uses an online distance learning model to provide a curriculum to teach patients and their loved ones coping skills that is not only about survival but also how to thrive in the face of cancer.  In addition to the online curriculum, Reimagine is a virtual place where people can connect and share stories about how they cope and how they overcome stressors with successes. They can interact with other like-minded people facing the same struggles as themselves. The site will also offer up-to-date publications, videos, and webinars for people to learn about what is going on with everything that has to do with the other half of cancer. Reimagine offers the opportunity for people to take their life back from cancer and get back to living no matter how long a time they may have.

 

MedgadgetWhat technology does the patient need to participate?

Robinson: Reimagine uses an online distance learning model to provide the evidence based Pillars4Life curriculum. A computer with access to the internet is all that is needed to participate.

The classes are conducted in real time, similar to online university classes, and includes live interaction with the professor (teacher/pillar guide) and other students.  The 10-Session Course is based on a unique framework called The Seven Pillars of Personal Recovery, which utilizes the following unique dimensions of coping: Hope, Balance, Inner Strengths, Self-Care, Support, Spirit and Life Review.

When not in session, patients and caregivers can stay connected through a variety of social media options, including having conversations with other Reimagine members, attending webinars and accessing our highly curated information and resources.  For instance, members will be able to create a personal profile within an interactive social community.   The profiles will include a news feed, photo upload, and much more.

The curriculum teaches patients and caregivers how to better manage their disease.

 

MedgadgetWhat clinical evidence do you have regarding the effectiveness of this tool? 

Robinson: Developed 11 years ago by co-founders Kristin MacDermott and Tina Staley, the original curriculum provided psychosocial support in a one-on-one and face-to-face setting as a pathway to a better quality of life. MacDermott and Staley worked steadily to evaluate and refine the curriculum in the clinic through extensive research, literature review and testing.

To date, the Pillars4Life curriculum has been validated with 10 years of clinical research and a track record of 11 years of helping patients.  A study conducted by the Duke University Comprehensive Cancer Center found that the Pillars4Life curriculum resulted in a greater sense of well-being, had a positive effect on key psychosocial and quality of life outcomes, especially distress and despair, and can see improvements despite the advanced stage of illness.

 

MedgadgetWhat challenges have you encountered in developing an online-based psychosocial intervention for patients? Is lack of face-to-face contact an issue?

Robinson: Although the original curriculum was based on psychosocial support in a one-on-one and face-to-face setting, Reimagine’s online distance learning now can deliver the therapeutic power of high-quality, psychosocial tools to a greater population.  This new curriculum has several advantages.  It will continue to teach participants to self-assess and become self-sufficient with their or their loved ones’ medical care, transforming how they think about their disease and improving beliefs, attitudes and receptivity to treatment.  Furthermore, it enhances the community with focused, expert guidance offered by trained experts in a larger setting.  Finally, it provides access to psychosocial care to anyone affected by cancer, wherever they are and whenever they need it.

 

MedgadgetHow were you able to garner attention from LiveSTRONG and other popular groups?

Robinson: Pillars4Life started in hospitals as a small program based on psychosocial support in a one-on-one and face-to-face setting as a pathway to a better quality of life. Through our close relationship and support from the medical community with evidence-based results, we have grown to be a key player in the care of cancer patients.  Since then, Reimagine has many partners in the cancer community including LiveSTRONG, National Institutes of Health, American College of Surgeons Oncology Group, National Cancer Institute, Pancreatic Cancer Action Network, Susan G. Komen Foundation, and more.

 

MedgadgetHow many hospitals and clinics have utilized Pillars4Life?

Robinson: Since 2003, thousands of patients have benefitted from the Pillars4Life curriculum.  Through a LiveSTRONG grant, 20 hospitals across the U.S. are now providing the Pillars4Life program in their institutions and LiveSTRONG itself is providing the program through its patient navigation program.

 

MedgadgetAre there any plans to expand the program beyond teleconference and videoconference, or in terms of content?

Robinson: At this time, Pillars4Life is focused on cancer care since cancer is a condition that affects virtually everyone – either as a patient, a family member, a friend or caregiver.  The Pillars4Life curriculum will continue to be tailored and hopes to be able to help others with various chronic illnesses in the future.

 


Ravi Parikh

Ravi is a student at Harvard Medical School and the Harvard Kennedy School of Government. He also co-chairs the Crimson Care Collaborative, a Harvard network of student-run clinics that serves patients who have limited access to primary care. His opinion pieces have been published in the Huffington Post, Philadelphia Inquirer, Boston Herald and Tampa Bay Times. He enjoys basketball, going home to Florida, and spending time with his now-fiancé.

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