Removing the Barriers to Patient Engagement: Stanford MedX 2014

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CareSync COO Amy Gleason talked to the Stanford MexX audience about removing barriers to patient engagement by connecting people with data to change the role they play in their healthcare. Access to meaningful, useful, and easily shareable health information empowers patients by equipping them with the resources they need to feel confident in their healthcare.

Healthcare

Reducing Barriers to Patient Engagement
Amy Gleason
Chief Operating Officer
CareSync
Board of Directors
Cure JM
Mom of Morgan
Stanford Medicine X 2014

Morgan’s Story
Our road to the diagnosis, navigating a web of providers,
and finding our care team support.
caresync.com 800.587.5227 © Continuum Labs, Inc. Private and Confidential
Morgan’s Story

May
2009
Saw primary care provider. Given a topical treatment.

Missing a lot of school for stomachaches and
headaches.
December
2009

“I am not strong enough to tumble.”
May
2010

Rash now on knees and ankles. Visit primary care
physician.
May
2010

May
2010
Diagnosed with psoriasis. Referred to a dermatologist.

Visited dermatologist. Likely psoriasis,
but did a biopsy, just in case.
June 10,
2010

June 18, 2010
“I am very sorry, but your daughter has a very serious
condition called Juvenile Dermatomyositis.”

June 18, 2010
Referred to Pediatric Rheumatologist.
Started prednisone, ordered labs and MRI.

June 18, 2010
Pediatric Rheumatologist Dr. Nickeson’s first available
appointment was on September, 30.

June 18,
2010
Found Cure JM on Google after desperately searching. Connected
with parents who referred us to Dr. Pachman. Appt for July 19.

When Patients Aren’t Engaged
• Higher Costs for patients with lower Patient Activation
Measure scores (PAM)
• 32% of ordered tests are duplicates because the results are
not available
• Patients give incorrect or incomplete medication lists 39% of
the time in the ER
• 70-80% of diagnoses can be made from the patient’s story
alone
• 60-80% of what the patient is told at a visit is forgotten within
3 days.

Reducing Barriers to Patient
Engagement
• Access to Information

Access
Fill out different forms for each facility and repeat each year

Reducing Barriers to Patient
Engagement
• Access to Information
• Meaningful Information

Meaningful Info
Gaming puts data in a new perspective

Reducing Barriers to Patient
Engagement
• Access to Information
• Meaningful Information
• Collaboration

Hospital
All Children’s
ACH Specialists
Dr. Casadante
Neurology
Dr. Ewig
Pulmonary
Gastroenterology
Dr. McClenathan
Gastro
Dr. Warnick
Orthopedic
Primary Care &
Rheumatology
Dr. Yousef
Family Doc
Dr. Nickeson
Rheumatologist
Super Specialists
Dr. Pachman
Chicago, IL
Dr. Rider
NIH in DC
BayCare Specialists
Dr. Arasu
Gastro
Dr. Belongie
Dermatology
Other Specialists
Amy Ponce
School Nurse
Chris Sequenzia
Physical Therapist

Morgan’s Additional Care Team & Support
Morgan’s care team is so much more
than just her providers. She relies on
daily support from her parents,
grandparents, siblings, aunts &
uncles, and the communities of other
JM families.

Reducing Barriers to Patient
Engagement
• Access to Information
• Meaningful Information
• Collaboration
• Communication and Convenience

Convenience and Communication
Meet patients where they are already

Removing Barriers to Access
• Provide EASY Access to ALL information
• Make the data meaningful to the patient and family (and to
the medical providers)Meaningful Information
• Provide ways for all people involved to collaborate around the
patient
• Make healthcare convenient to the patient and provide
communication tools that meet their preference and
expectations

This session at the Stanford University School of Medicine "Medicine X 2013" conference examined the perception gap between patients and their spouses about severity of disease and suffering, with insights from a cancer patient, Maggie Heim, and her husband, Paul Hoffman, and from Aanand Naik, MD. Healthcare professionals need to be more attuned to the potential for a communications disconnect between a patient and his/her caregiver, which could lead to inadequate treatment. We discussed several studies, including a survey that Inspire conducted in 2012 in collaboration with Novartis, illustrating this gap: "Perceptions of stage IV NSCLC patients and caregivers regarding severity of symptoms and willingness to participate in supportive care trials."

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Amy Gleason, COO of CareSync, discusses reducing the barriers to patient engagement with the use of technology. She outlines some of the challenges her family faced as they navigated the complicated healthcare system, and the inadequacies and inconvenience with managing health information across multiple patient portals and multiple providers. Amy describes how the barriers are broken down with: Access to Information Meaningful Information Collaboration Convenience and Communication

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Defecation Normal defecation begins with movement in the left colon, moving stool toward the anus. When stool reaches the rectum, the distention causes relaxation of the internal sphincter and an awareness of the need to defecate. At the time of defecation, the external sphincter relaxes, and abdominal muscles contract, increasing intrarectal pressure and forcing the stool out The Valsalva maneuver exerts pressure to expel faeces through a voluntary contraction of the abdominal muscles while maintaining forced expiration against a closed airway. Patients with cardiovascular disease, glaucoma, increased intracranial pressure, or a new surgical wound are at greater risk for cardiac dysrhythmias and elevated blood pressure with the Valsalva maneuver and need to avoid straining to pass the stool. Normal defecation is painless, resulting in passage of soft, formed stool CONSTIPATION Constipation is a symptom, not a disease. Improper diet, reduced fluid intake, lack of exercise, and certain medications can cause constipation. For example, patients receiving opiates for pain after surgery often require a stool softener or laxative to prevent constipation. The signs of constipation include infrequent bowel movements (less than every 3 days), difficulty passing stools, excessive straining, inability to defecate at will, and hard feaces IMPACTION Fecal impaction results from unrelieved constipation. It is a collection of hardened feces wedged in the rectum that a person cannot expel. In cases of severe impaction the mass extends up into the sigmoid colon. DIARRHEA Diarrhea is an increase in the number of stools and the passage of liquid, unformed feces. It is associated with disorders affecting digestion, absorption, and secretion in the GI tract. Intestinal contents pass through the small and large intestine too quickly to allow for the usual absorption of fluid and nutrients. Irritation within the colon results in increased mucus secretion. As a result, feces become watery, and the patient is unable to control the urge to defecate. Normally an anal bag is safe and effective in long-term treatment of patients with fecal incontinence at home, in hospice, or in the hospital. Fecal incontinence is expensive and a potentially dangerous condition in terms of contamination and risk of skin ulceration HEMORRHOIDS Hemorrhoids are dilated, engorged veins in the lining of the rectum. They are either external or internal. FLATULENCE As gas accumulates in the lumen of the intestines, the bowel wall stretches and distends (flatulence). It is a common cause of abdominal fullness, pain, and cramping. Normally intestinal gas escapes through the mouth (belching) or the anus (passing of flatus) FECAL INCONTINENCE Fecal incontinence is the inability to control passage of feces and gas from the anus. Incontinence harms a patient’s body image PREPARATION AND GIVING OF LAXATIVESACCORDING TO POTTER AND PERRY, An enema is the instillation of a solution into the rectum and sig

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According to TechSci Research report, "India Clinical Trials Market- By Region, Competition, Forecast & Opportunities, 2030F," the India Clinical Trials Market was valued at USD 2.05 billion in 2024 and is projected to grow at a compound annual growth rate (CAGR) of 8.64% through 2030. The market is driven by a variety of factors, making India an attractive destination for pharmaceutical companies and researchers. India's vast and diverse patient population, cost-effective operational environment, and a large pool of skilled medical professionals contribute significantly to the market's growth. Additionally, increasing government support in streamlining regulations and the growing prevalence of lifestyle diseases further propel the clinical trials market. Growing Prevalence of Lifestyle Diseases The rising incidence of lifestyle diseases such as diabetes, cardiovascular diseases, and cancer is a major trend driving the clinical trials market in India. These conditions necessitate the development and testing of new treatment methods, creating a robust demand for clinical trials. The increasing burden of these diseases highlights the need for innovative therapies and underscores the importance of India as a key player in global clinical research.

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Explore our infographic on 'Essential Metrics for Palliative Care Management' which highlights key performance indicators crucial for enhancing the quality and efficiency of palliative care services. This visual guide breaks down important metrics across four categories: Patient-Centered Metrics, Care Efficiency Metrics, Quality of Life Metrics, and Staff Metrics. Each section is designed to help healthcare professionals monitor and improve care delivery for patients facing serious illnesses. Understand how to implement these metrics in your palliative care practices for better outcomes and higher satisfaction levels.

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Pediatric nurses play a vital role in the health and well-being of children. Their responsibilities are wide-ranging, and their objectives can be categorized into several key areas: 1. Direct Patient Care: Objective: Provide comprehensive and compassionate care to infants, children, and adolescents in various healthcare settings (hospitals, clinics, etc.). This includes tasks like: Monitoring vital signs and physical condition. Administering medications and treatments. Performing procedures as directed by doctors. Assisting with daily living activities (bathing, feeding). Providing emotional support and pain management. 2. Health Promotion and Education: Objective: Promote healthy behaviors and educate children, families, and communities about preventive healthcare. This includes tasks like: Administering vaccinations. Providing education on nutrition, hygiene, and development. Offering breastfeeding and childbirth support. Counseling families on safety and injury prevention. 3. Collaboration and Advocacy: Objective: Collaborate effectively with doctors, social workers, therapists, and other healthcare professionals to ensure coordinated care for children. Objective: Advocate for the rights and best interests of their patients, especially when children cannot speak for themselves. This includes tasks like: Communicating effectively with healthcare teams. Identifying and addressing potential risks to child welfare. Educating families about their child's condition and treatment options. 4. Professional Development and Research: Objective: Stay up-to-date on the latest advancements in pediatric healthcare through continuing education and research. Objective: Contribute to improving the quality of care for children by participating in research initiatives. This includes tasks like: Attending workshops and conferences on pediatric nursing. Participating in clinical trials related to child health. Implementing evidence-based practices into their daily routines. By fulfilling these objectives, pediatric nurses play a crucial role in ensuring the optimal health and well-being of children throughout all stages of their development.

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CRISPR-Cas9, a revolutionary gene-editing tool, holds immense potential to reshape medicine, agriculture, and our understanding of life. But like any powerful tool, it comes with ethical considerations. Unveiling CRISPR: This naturally occurring bacterial defense system (crRNA & Cas9 protein) fights viruses. Scientists repurposed it for precise gene editing (correction, deletion, insertion) by targeting specific DNA sequences. The Promise: CRISPR offers exciting possibilities: Gene Therapy: Correcting genetic diseases like cystic fibrosis. Agriculture: Engineering crops resistant to pests and harsh environments. Research: Studying gene function to unlock new knowledge. The Peril: Ethical concerns demand attention: Off-target Effects: Unintended DNA edits can have unforeseen consequences. Eugenics: Misusing CRISPR for designer babies raises social and ethical questions. Equity: High costs could limit access to this potentially life-saving technology. The Path Forward: Responsible development is crucial: International Collaboration: Clear guidelines are needed for research and human trials. Public Education: Open discussions ensure informed decisions about CRISPR. Prioritize Safety and Ethics: Safety and ethical principles must be paramount. CRISPR offers a powerful tool for a better future, but responsible development and addressing ethical concerns are essential. By prioritizing safety, fostering open dialogue, and ensuring equitable access, we can harness CRISPR's power for the benefit of all. (2998 characters)

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Removing the Barriers to Patient Engagement: Stanford MedX 2014

1. Reducing Barriers to Patient Engagement Amy Gleason Chief Operating Officer CareSync Board of Directors Cure JM Mom of Morgan Stanford Medicine X 2014

2. Morgan’s Story Our road to the diagnosis, navigating a web of providers, and finding our care team support. caresync.com 800.587.5227 © Continuum Labs, Inc. Private and Confidential Morgan’s Story

3. The Road to Diagnosis

4. Rash on elbows and hands. Feb-May 2009

5. May 2009 Saw primary care provider. Given a topical treatment.

6. Broken foot. From walking. July 2009

7. Missing a lot of school for stomachaches and headaches. December 2009

8. “I am not strong enough to tumble.” May 2010

9. Rash now on knees and ankles. Visit primary care physician. May 2010

10. May 2010 Diagnosed with psoriasis. Referred to a dermatologist.

11. Visited dermatologist. Likely psoriasis, but did a biopsy, just in case. June 10, 2010

12. June 18, 2010 “I am very sorry, but your daughter has a very serious condition called Juvenile Dermatomyositis.”

13. June 18, 2010 Referred to Pediatric Rheumatologist. Started prednisone, ordered labs and MRI.

14. June 18, 2010 Pediatric Rheumatologist Dr. Nickeson’s first available appointment was on September, 30.

15. June 18, 2010 Found Cure JM on Google after desperately searching. Connected with parents who referred us to Dr. Pachman. Appt for July 19.

16. When Patients Aren’t Engaged • Higher Costs for patients with lower Patient Activation Measure scores (PAM) • 32% of ordered tests are duplicates because the results are not available • Patients give incorrect or incomplete medication lists 39% of the time in the ER • 70-80% of diagnoses can be made from the patient’s story alone • 60-80% of what the patient is told at a visit is forgotten within 3 days.

17. Reducing Barriers to Patient Engagement • Access to Information

18. Access Fill out different forms for each facility and repeat each year

19. Getting Better

20. Reducing Barriers to Patient Engagement • Access to Information • Meaningful Information

21. Meaningful Info

22. Meaningful Info

23. Meaningful Info Gaming puts data in a new perspective

24. Reducing Barriers to Patient Engagement • Access to Information • Meaningful Information • Collaboration

25. Hospital All Children’s ACH Specialists Dr. Casadante Neurology Dr. Ewig Pulmonary Gastroenterology Dr. McClenathan Gastro Dr. Warnick Orthopedic Primary Care & Rheumatology Dr. Yousef Family Doc Dr. Nickeson Rheumatologist Super Specialists Dr. Pachman Chicago, IL Dr. Rider NIH in DC BayCare Specialists Dr. Arasu Gastro Dr. Belongie Dermatology Other Specialists Amy Ponce School Nurse Chris Sequenzia Physical Therapist

26. Morgan’s Additional Care Team & Support Morgan’s care team is so much more than just her providers. She relies on daily support from her parents, grandparents, siblings, aunts & uncles, and the communities of other JM families.

27. Collaboration

28. Reducing Barriers to Patient Engagement • Access to Information • Meaningful Information • Collaboration • Communication and Convenience

29. Convenience and Communication

30. Convenience and Communication Meet patients where they are already

31. Removing Barriers to Access • Provide EASY Access to ALL information • Make the data meaningful to the patient and family (and to the medical providers)Meaningful Information • Provide ways for all people involved to collaborate around the patient • Make healthcare convenient to the patient and provide communication tools that meet their preference and expectations

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