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Results of the Pinpoint Project

Results of the Pinpoint Project

The Pinpoint web app was created and evaluated by Klein Buendel in collaboration with HPC International through a grant funded by the National Institute on Minority Health and Health Disparities (MD010746; Dr. Valerie Myers, Principal Investigator). Designed for adolescents aged 13-17, the Pinpoint web app provides education on communication strategies and sickle cell disease (SCD) care management. Pinpoint includes a pain assessment tool, vocabulary game, body scanner reflection, and educational self-disclosure activity. It was developed as an interactive gaming web app for use on smartphones, tablets, and desktop computers. Learning Buddies were added to act as a guide for the teen in the app to explain each activity and feature with text and voiceover. There are two Learning Buddy characters to choose from, each of whom had their own fictional story about living with SCD. Learning Buddies are customizable, allowing teen participants to choose clothing, hair style, and skin tone upon registering for the app. For each activity the teens participate in, points can be earned to unlock additional customization options, including hats, jewelry, and more hairstyles and clothing options. A Self-Disclosure Stories section was also added to the web app. This consists of stories from real people, including children, young adults, and older adults living with SCD.

The fully developed app was used to interview clinicians to evaluate content and clinical meaningfulness (n=10). Additionally, adolescents (n=11), aged 13-17, with SCD participated in usability testing to evaluate the user interface, ease of use, and perceived barriers. Both clinicians and teens participating in the usability study were encouraged to go through the app on their own while sharing their screen and describing aloud their thoughts and impressions of the app. They were then guided to specific parts of the app (such as the vocabulary game, self-disclosure activity, Pain Assessment Tool, Body Scanner Reflection, and Learning Buddies) to review.

Overall, clinicians believed the app content was meaningful and engaging, would help their patients better identify SCD pain and would help them better treat their patients’ pain. Clinicians also said they would encourage SCD patients to use the app. Teen participants in the usability testing found the app to be easy to use and understand. They enjoyed the interactivity of the games, found the Learning Buddy to be interesting and relatable, and liked that they could share the information recorded on the pain assessment tool with caregivers and healthcare providers by text or email.

In a subsequent randomized, stepped-wedge trial, the app was tested with 13–17-year-olds with SCD and one of their parents to evaluate changes in knowledge acquisition for communicating about pain. Community-based recruitment strategies were used. This involved attending SCD conferences, creating relationships with community-based organizations (such as sickle cell associations, sickle cell camps, libraries, Boys and Girls clubs, YMCAs, and clinics), online recruitment (such as Facebook/Reddit ads and posting in SCD-specific groups on Facebook/Reddit), partnering with companies that specialize in recruiting for SCD research, and snowball recruitment. Through these efforts, 24 teen/parent dyads were successfully recruited and randomly assigned to study group.

Both teens and their parent took a survey every 4 weeks for 12-16 weeks and used the app for 4-12 weeks, depending on which arm of the study they were assigned. Parents and teens randomized into Arms 1-3 took surveys every 4 weeks for 12 weeks and downloaded the Pinpoint app at Baseline (Arm 1; used the app for 12 weeks), 4 Weeks (Arm 2; used the app for 8 weeks), or 8 Weeks (Arm 3; used the app for 4 weeks), while participants in Arm 4 took surveys every 4 weeks for 16 weeks and downloaded the Pinpoint app at 12 Weeks (used the app for 4 weeks). Surveys were completed during a virtual check-in via Zoom with a member of the study staff. There was 100% retention of both parents and adolescents throughout the intervention for follow-up surveys.

Adolescents reported on pain interference, peer relationships, physical stress experiences, psychological stress experiences, pain behavior, pain quality, experiences with providers, family relationships, communication, and personal experiences with the SCD. Parents were assessed on disease knowledge, family relationships, family communication, and their experiences managing their child’s SCD. The adolescents were 92% African American, 8% Hispanic, 54% male, and the mean age was 14.8. SCD was not a new disease for any of the participants. The parents were 93% African American, 4% Hispanic, 92% female, and the mean age was 44.9. The small sample size prohibits the investigators from evaluating changes between groups, though summary statistics at each time point were created and reviewed.

In the final surveys, adolescents also reported on the usability of the web app:

At the baseline and the final survey time points, adolescents reported on communication and SCD pain management:

Lastly, web app usage data was collected. From the 24 adolescents randomized, 34 pain reports were entered by 16 unique users (67%) within the app. Of those pain reports recorded, 20 (59%) were shared with their parent or health care provider via the app.

Pinpoint is available to individuals and medical providers. To learn more about the Pinpoint app, check out the video tutorial or visit HPC International.

KB and HPC International Launch Pinpoint

KB and HPC International Launch Pinpoint

Klein Buendel has partnered with HPC International, a leading purchased services provider for healthcare, corporations and academic institutions, to create Pinpoint™, the first-of-its-kind sickle cell pain management app, which provides a safe, interactive, and convenient way for patients to learn about, track, assess, and communicate with their doctors about their sickle cell pain.

The Pinpoint sickle cell pain management app provides a safe, interactive, and convenient way for patients to learn about, track, assess, and communicate with their doctors about  sickle cell pain.

Developed with teens in mind, people of all ages benefit from the Pinpoint app to identify different types of pain associated with sickle cell disease. Using gaming technology, Pinpoint offers an innovative pain assessment tool and a pain diary to log physical and emotional pain symptoms. With the touch of a finger, patients are able to describe and assess the intensity, duration, quality, nature, and location of the pain and report it to their caregivers and physician in real-time. Pinpoint is a web app and works on any smartphone or smart mobile device. Patients can play games, watch videos, learn preventive health tips, and visit the Patient Stories section with real stories and inspirational messages told by other sickle cell patients. 

Sickle cell disease is an inherited disorder of the red blood cells that disproportionately affects people of color. Chronic pain is the most common complication and profoundly disrupts people’s quality of life. Clinicians are often unsuccessful at addressing chronic pain in sickle cell disease, underscoring the need for the Pinpoint app. 

“The pain caused by sickle cell disease is incredibly difficult to manage and ‘pinpoint,’ especially for young patients,” said Hilton Hudson, MD, FACS, CEO of HPC International. “When meeting with top researchers at Children’s Hospital in Washington D.C., we all agreed that clinicians needed a better way to treat the different types of pain sickle cell patients may experience, which led HPC to develop a tool to do just that.” 

“Teaming up with HPC International and supported by grants from the NIH, Klein Buendel was privileged to create a supportive pain management tool for patients with sickle cell disease,” said Mary Buller, MA, President of Klein Buendel. “HPC and Klein Buendel combined content experts and web developers into a winning combination for patients and doctors.” 

The educational content in the Pinpoint app comes from the renowned and best-selling Hope & Destiny book series, written by three clinical expert leaders in hematology: James Eckman, MD, Lewis L Hsu, MD, PhD and Allan Platt, PA-C, MMSc. Hope & Destiny is Hilton Publishing’s premier educational book series on sickle cell disease and is tailored for different reader age groups, including adults and parents as well as adolescent patients. 

The Pinpoint app development project was facilitated through two Small Business Innovative Research (SBIR) grants, awarded in 2016 and 2018 by the National Institutes of Health (NIH). HPC collaborated with Klein Buendel, medical experts, teens, and parents of children with sickle cell disease to study how an interactive app with a customized pain assessment tool could provide an improved way for adolescents with sickle cell disease to learn about and better manage their disorder. The study’s Expert Advisory Board was formed by clinicians from institutions and nonprofit organizations including HOPE for SCD, UIC, Emory Healthcare, Children’s National, Marquette University College of Nursing, and the International Association of Sickle Cell Nurses and Professional Associates.

Pinpoint has been clinically evaluated to help aid in the management of pain caused by sickle cell disease. Market research, focus groups, surveys, interviews, and two comprehensive research studies were conducted virtually and in-person with teens, parents and clinical specialists representing communities across the country from 2016 through 2022.  Research reported in this press release was supported by the National Institute on Minority Health and Health Disparities under grant numbers R43MD010746 and R44MD010746 awarded to Klein Buendel (Dr. Valerie Myers, initial Principal Investigator; Ms. Julia Berteletti, final Principal Investigator). Pinpoint was designed and programmed by Mr. Adam Ashby of the Klein Buendel Creative Team.

Already, Pinpoint has been featured in:

Sickle Cell Disease News, a healthcare industry website, which provides the sickle cell disease community with the most recent news and information on sickle cell disease.

MedCity News, a leading digital healthcare outlet.

LegalReader.com in their Health & Medicine section on August 23rd.

Healthcare IT Today, a leading digital health tech outlet, in a roundup of healthcare industry news (under the ‘Partnerships’ section) on August 17th.

Pinpoint is available to individuals and medical providers. An individual annual subscription fee is $9.99. To learn more about the Pinpoint app, check out the video tutorial or visit HPC International.

Collaborator Spotlight:
Dr. Derek Griffith

Collaborator Spotlight:
Dr. Derek Griffith

Dr. Derek Griffith is a Founding Co-Director of the Racial Justice Institute, the Founder and Director of the Center for Men’s Health Equity, a Professor of Health Systems Administration and Oncology, and a Member of the Lombardi Comprehensive Cancer Center at Georgetown University in Washington, DC. He earned his Ph.D. from DePaul University in 2002 and completed a Post-Doctoral Fellowship at the University of North Carolina School of Public Health in 2004.

Dr. Griffith’s research focuses on strategies to improve African American men’s health, such as precision lifestyle medicine interventions to prevent and control obesity and other chronic diseases. Specifically, he studies the “links between notions of masculinity or manhood and health among men of color; the role of stress and coping processes in men’s health disparities; and how gender intersects with race, ethnicity, SES and other variables to shape men’s physical and mental health behavior and health outcomes.” 

In a current research project, Dr. Griffith is a Co-Investigator with Dr. Robert Newton from the Pennington Biomedical Research Center in Louisiana and Dr. David Buller from Klein Buendel on a study to develop and evaluate a smartphone app to increase and maintain physical activity in African American. The app is called FitBrothers and will include personalization, chronic disease health information, dietary information, competition activities, and incentives to promote and sustain physical activity. The study is being funded by a Small Business Technology Transfer grant to Klein Buendel from the National Institute on Minority Health and Health Disparities (MD014947; Dr. Robert Newton and Dr. David Buller, Multiple Principal Investigators).

Dr. Griffith has received research grants as the Principal Investigator from the American Cancer Society, the Robert Wood Johnson Foundation, and several institutes within the National Institutes of Health. He has authored over 140 peer-reviewed manuscripts and serves on the editorial boards of several public health and men’s health journals.

Dr. Griffith has received multiple distinguished awards and honors throughout his career, including:

  • The Tom Bruce Award from the Community-Based Public Health Caucus of the American Public Health Association in recognition of his research on eliminating health disparities that vary by race, ethnicity and gender;
  • Recognition as a Fellow of the American Academy of Health Behavior for his significant contributions to the field of health behavior research; and
  • Designation as one of 1,000 Inspiring Black Scientists in America by the Cell Mentor’s Community of Scholars. 

FitBrothers

FitBrothers

African American men experience significant health disparities across a number of preventable chronic diseases including cardiovascular disease, strokes, diabetes, and cancer. Physical activity (PA) is a modifiable risk factor for these conditions. However, the limited number of clinic- or community-based PA promotion studies that have included African American men have resulted in successful short-term behavior change for PA levels. Maintenance of increased PA levels over an extended time period is needed for sustained health benefits.

A research team from Klein Buendel, the Pennington Biomedical Research Center (PBRC), and Georgetown University are launching a new research project to address PA maintenance in African American men with technology. The project is: A Smartphone App to Increase and Maintain Physical Activity in African American Men (FitBrothers). The effort is being led by Dr. Robert Newton from PBRC and is being funded by a Fast-Track STTR grant to Klein Buendel from the National Institute on Minority Health and Health Disparities (MD014947; Dr. Robert Newton, Principal Investigator).

Dr. Newton’s preliminary focus group data indicates that African American men would be receptive to maintenance strategies delivered via smartphone. For this new project, the team will develop a prototype smartphone app and conduct usability testing to determine design viability and acceptability among would-be users in Phase I. In Phase II, the team will conduct a comparative effectiveness trial to assess success of the app on the PA maintenance levels of participating African American men.

Dr. Newton is an Associate Professor of Physical Activity and Ethnic Minority Health at PBRC. His research collaborators include Dr. Derek Griffith from Georgetown University and Dr. David Buller from Klein Buendel. Dr. Griffith is the Founding Co-Director of the Racial Justice Institute, Founder and Director of the Center for Men’s Health Equity, and Professor of Health Systems Administration and Oncology at Georgetown. Dr. Buller is the Director of Research at Klein Buendel. The FitBrothers app will be engineered by Klein Buendel’s Creative Team.

Physical Activity Maintenance in African American Men

Physical Activity Maintenance in African American Men

In a recent publication in mHealth, Dr. Robert Newton, Dr. Valerie Myers, and their coauthors describe the development of a smartphone app to help African American men maintain physical activity. The formative research was funded by a Small Business Technology Transfer (STTR) grant to Klein Buendel from the National Institute on Minority Health and Health Disparities.

African American men experience higher rates of morbidity and mortality from several chronic diseases that have low physical activity as a modifiable risk factor. For example, increased levels of physical activity have been shown to reduce the risk of developing obesity, cardiovascular disease, and diabetes. Yet, African American men’s levels of regular physical activity remain low.

The study set out to develop and test the feasibility of a prototype smartphone app to promote physical activity maintenance in African American men. The publication describes formative research (focus groups), user-centered design, and evaluation (usability testing and one-month beta testing) of the MobileMen app through an iterative process with participants from the target population.

MobileMen and its learning activities were designed with a Social Cognitive Theory framework. The programmed app included a dashboard, learning activities, a prompting system, an activity tracker, and rewards.

Users reported above average satisfaction with the app. They also rated the app as user-friendly, helpful, enjoyable, and culturally relevant. The participants reported willingness to use the app to improve their physical activity. Rates of app use and other data are reported in the paper. A full description of the methods, results, conclusions, strengths, and limitations of the feasibility study, as well as a discussion on the inclusion of nutrition information, can be found in the mHealth publication.

The STTR Phase I project was funded by grant number MD010304 (Dr. Robert Newton, Pennington Biomedical Research Center, Principal Investigator). Coauthors include Dr. Valerie Myers and Tiffany Jerrod from Klein Buendel, Leah Carter and Jessica Romain from the Pennington Biomedical Research Center, and Dr. Derek Griffith from Vanderbilt University.

African Heritage and Health Week

African Heritage and Health Week

The first week of February is African Heritage and Health Week – a celebration of the flavors and healthy cooking techniques that were central and vital to the well-being of African ancestors from Africa, South America, the Caribbean, and the American South. February is the perfect time to honor and explore this healthy culinary history because it is also Black History Month.

African Heritage and Health Week was pioneered by Oldways to promote healthier, happier living through cultural food traditions. Studies have shown that many chronic conditions such as diabetes, heart disease, and obesity, now prevalent in African American communities, tend to appear in populations as traditional diets are changed or abandoned. The program is designed to raise awareness about the health benefits and exciting flavors of traditional African heritage cuisines, and to invite people everywhere to taste these traditional foods, whether at a restaurant, a community event, or at home with friends and family.

Klein Buendel’s Real Health Photos® can help increase the effectiveness of health campaigns – such as those promoting healthy cultural cooking in African American communities – by providing photographs for print and digital media that represent and appeal to the target population. This unique stock photography enterprise includes numerous images of people shopping, cooking, and eating in healthy ways. Real Health Photos show diversity of gender, race, ethnicity, age, income level, and health condition.

Real Health Photos is a stock photography service owned and operated by Klein Buendel. It was developed with a research grant (MD003338, Mary Buller, Principal Investigator) from the National Institute of Minority Health and Health Disparities at the National Institutes of Health. Real Health Photos is designed to capture the diversity of health through photography and promote the inclusion of all populations in health promotion materials and media – and the effectiveness of the intended health message.

For more images, visit Real Health Photos.

Ms. Mary Buller, President and Owner of Klein Buendel, and her coauthors recently published a paper on their photographic research in the Journal of Health Communication.

Pinpoint: A Pain Management Tool for Teens with Sickle Cell Disease

Pinpoint: A Pain Management Tool for Teens with Sickle Cell Disease

Klein Buendel (KB) Senior Scientist, Dr. Valerie Myers, is the Principal Investigator leading a new research project to improve a self-care and pain management tool for teens with Sickle Cell Disease (SCD). SCD is the most common inherited blood disorder in the U.S. It affects primarily African Americans and Hispanics. Approximately, 100,000 people in the U.S. suffer from SCD and serious, painful complications can have a significant impact on well-being and quality of life.

Using interactive technology accessible on computers, tablets, and smartphones, the Pinpoint app will combine education, healthy living tips, and tools for managing pain through at-home techniques like relaxation, self-reflection, and a better understanding of the different types of pain teens might experience (acute versus chronic pain).

In a Phase I project, an initial prototype of Pinpoint was developed and reviewed. It included a Pain Assessment Tool, vocabulary game, body scanner reflection, educational self-disclosure activity, and excerpts from the Hope and Destiny Jr. book authored by Hsu, Rodrigues, and Brandalise. Four healthcare providers were interviewed on the app’s acceptability and potential function within the clinical practice. Sixteen teens participated in cognitive interviews, focus groups, and usability testing. The System Usability Scale (SUS; Bangor et al., 2011), a validated tool for assessing the usability and acceptability of technological products, served as the primary outcome. The preliminary SUS score well above average, suggesting a high level of acceptability and usability among users.

The full Pinpoint app being developed in the new Phase II study can be used in healthcare settings to reduce barriers in obtaining information from adolescents by using technology they are comfortable with and enjoy using, while also providing important pain data to healthcare teams and family that affect treatment options. By empowering teens with knowledge and enhanced communication skills, Pinpoint can help reduce emergency room visits and assist SCD teens to transition more successfully to adulthood with independence.

The Pinpoint project is being funded by the National Institute on Minority Health and Health Disparities at the National Institutes of Health (MD010746). It is being conducted in close partnership with the Hilton Publishing Company (HPC), the publisher of Hope & Destiny Jr., a leading book for teens on SCD management. Dr. Myers’ research collaborators include Ms. Mary Buller from KB, Dr. Lewis Hsu from the University of Illinois, Mr. Allan Platt from Emory University in Georgia, Dr. Gary Cutter from Pythagorus, Inc. and the University of Alabama at Birmingham, and Dr. Hilton Hudson from HPC. KB’s developers will design and program the Pinpoint app.

Precision Pain Management App for Adolescents with Sickle Cell Disease

Precision Pain Management App for Adolescents with Sickle Cell Disease

Dr. Valerie Myers, KB Senior Scientist, is presenting a poster on the Pinpoint Project at the 39th Annual Meeting and Scientific Sessions of the Society of Behavioral Medicine, April 11-14, 2018 in New Orleans, Louisiana.

“Pinpoint: Gaming Technology to Engage Adolescent Sickle Cell Patients in Precision Pain Management” was a Phase I SBIR project that examined the feasibility and acceptability of a gamified tablet application intended to encourage teens (aged 13-17) to assess and talk about their sickle cell disease (SCD) pain. SCD is the most common inherited blood disorder in the U.S. and affects primarily African Americans and Hispanics. Approximately, 1,000 U.S. children are born with SCD annually. SCD complications can be serious and have a significant impact on well-being and quality of life.

Pain is the hallmark symptom associated with SCD and is the primary cause of SCD-related hospital admissions. Accurate assessment of pain specifiers (type, frequency, and intensity of pain) can help with ameliorating pain quickly and effectively. Reducing barriers to collection and promoting the value of accurate SCD pain assessment is a need in pediatric medicine. The interactive games for health literacy among youths have shown video games can improve self-efficacy; stimulate health discussions with friends, family, and clinical team; encourage seeking support and advice, and can emphasize behavior acquisition via experiential learning. Interactive games can provide information about causes, treatments, and self-care options, and can improve self-care and reduced emergency clinical utilization.

The Pinpoint app prototype for tablets and smartphones consisted of a Pain Assessment Tool, vocabulary game, body scanner reflection, educational self-disclosure activity, and excerpts from the Hope and Destiny Jr. book authored by Hsu, Rodrigues, and Brandalise. Four healthcare providers were interviewed on the app’s acceptability and potential function within the clinical practice. Sixteen teens participated in cognitive interviews, focus groups, and usability testing. The System Usability Scale (SUS), a validated tool for assessing the usability and acceptability of technological products, served as the primary outcome. The preliminary SUS score well above average, suggesting a high level of acceptability and usability among users. The conference poster will include final project outcomes and the plan for the future development of the full Pinpoint app.

This research was funded by a grant from the National Institute on Minority Health and Health Disparities (R43MD010746; Dr. Valerie Myers, PI). Research collaborators included Mary Buller from KB, and Dr. Hilton Hudson and Megan Lippert from the Hilton Publishing Company, publishers of the Hope & Destiny and Hope & Destiny Jr. sickle cell disease management books.