Listening to Patients With Lupus: Why Not Proactively Integrate the Internet as a Resource to Drive Improved Care?

Systemic lupus erythematosus (SLE) is a multisystem autoimmune disease. It is characterized by a broad spectrum of manifestations, depending on the affected organs and the severity of the inflammation at the time of presentation. Despite improvements in management, treatments are required on a chronic, cyclical basis; have high potential for unpleasant side effects; and deliver variable efficacy. Patients require care from multiple specialists, which can be delivered simultaneously and sporadically. Our fragmented health care system further exacerbates the disconnect between intermittent medical care and the lived experiences of patients with SLE. The goals of this research are to (1) assess the current standard of care for patients with SLE through the review of medical literature, including clinical consensus guidelines and systematic reviews; (2) assess the lived experiences of patients with lupus through the review of peer-reviewed literature on social listening, structured interviews, and data available from the open-access digital health platform PatientsLikeMe; and (3) present the perspective that the medical community has an opportunity to acknowledge and review the use of digital health interventions (DHIs) with their patients. The results of this research indicate that patients are incorporating DHIs, such as the internet and social media platforms, as critical components of their care for even the most basic of support. Although patients with SLE are depending on this support to shape their care, it is not considered a primary source of care by clinicians. Integrating the voices of patients brings valuable dimension to understanding the lived experiences of patients with SLE and the impacts of mutually dependent patient needs as patients navigate the disease in daily life. The medical community has a meaningful opportunity to leverage and recommend existing DHIs, such as web-based community platforms and web-based patient registries, at every stage of the patient journey to help patients better manage their condition. This has the potential to proactively build patient trust and well-being, reduce the underreporting of symptoms, increase shared decision-making, inform and shape clinical guidelines and future research, and improve patient outcomes.

Designing a Browser Extension for Reliable Online Health Information Retrieval Among Older Adults Using Design Thinking.

The pervasiveness of online mis/disinformation escalated during the COVID-19 pandemic. To address the proliferation of online mis/disinformation, it is critical to build reliability into the tools older adults use to seek health information. On average, older adult populations demonstrate disproportionate susceptibility to false messages spread under the guise of accuracy and were the most engaged with false information about COVID-19 across online platforms when compared to other age-groups. In a design-thinking challenge posed by AARP to graduate students in a Digital Health course at Tufts University School of Medicine, students leveraged existing solutions to design a web browser extension that is responsive to both passive and active health information-seeking methods utilized by older adults in the United States. This paper details the design-thinking process employed, insights gained from primary research, an overview of the prototyped solution, and insights relating to the design of effective health information-seeking platforms for older adults.

The role of home medication storage location in increasing medication adherence for middle-aged and older adults.

Background: Over 50% of US adults do not take their prescriptions as prescribed, which is responsible for 33%-69% of hospital admissions and 125,000 deaths annually. Given the higher prevalence of prescription drug use among middle-aged and older adult populations, promoting medication adherence is of particular importance with these age groups. Two speculated facilitators of medication adherence are home medication storage location and the use of digital health devices. Objective: Our objective was to use survey data to investigate the associations between medication storage location and medication adherence among adults 40 years and older. Additionally, we aimed to report preliminary findings about the associations between use of devices and medication adherence in this same population. Methods: We conducted primary analysis of data sampled from a home medication management survey deployed in November 2021 (n = 580). We conducted exploratory analyses by way of chi2 tests and creation of bivariate logistic regression models. Results: The most commonly used storage locations by our sample were nightstand drawers (27%), kitchen cabinets (25%), and atop bedroom nightstands (23%). Several medication storage locations were significantly associated with decreased odds of having ever forgotten to take a medication, including kitchen drawers, in refrigerators, atop bedroom nightstands, in nightstand drawers, and backpacks, purses, or bags. Two home medication storage locations were significantly associated with increased odds of having ever forgotten to take a medication: kitchen cabinets and bathroom vanities. Further, most (94%) survey respondents indicated they would be receptive to guidance about where to store their medications. Conclusions: Given that some home medication storage locations are associated with adherence, an intervention to guide storage location selection may support increased adherence, especially with high receptivity expressed for such guidance. Increased adherence may also accrue from device usage paired with optimized home medication storage location. We plan to investigate that further, as well as how new device designs can incorporate contextual cues related to location to promote medication adherence more effectively in middle aged and older adults.

Design Thinking to Create a Remote Patient Monitoring Platform for Older Adults' Homes.

How might clinicians collect the vitals needed for effective scheduled video visits for older adults? This challenge was presented by AARP to graduate students in a Digital Health course at Tufts University School of Medicine. The design thinking process was used to create a product that would meet this need, keeping the needs and constraints of older adults, especially those with chronic conditions or other barriers to health, central to the solution. The initial steps involved understanding and empathizing with the target audience through interviews and by developing personas and scenarios that identified barriers and opportunities. The later steps were to ideate potential solutions, design a prototype, and define product success. The design thinking process led to the design of Home Health Hub, a remote patient monitoring (RPM) platform designed to meet the unique needs of older adults. Additionally, Home Health Hub can conceivably benefit all users of telehealth, regardless of health status-an important need during the COVID-19 pandemic, and in general due to increased use of virtual visits. Home Health Hub is one example of what can be achieved with the dedicated use of design thinking. The design thinking process can benefit public health practice as a whole by encouraging practitioners to delve into a problem to find the root causes and empathize with the needs and constraints of stakeholders to design innovative, human-centered solutions.

Monitoring Older Adult Blood Pressure Trends at Home as a Proxy for Brain Health.

Even when older adults monitor hypertension at home, it is difficult to understand trends and share them with their providers. MyHealthNetwork is a dashboard designed for patients and providers to monitor blood pressure readings to detect hypertension and ultimately warning signs of changes in brain health. A multidisciplinary group in a Digital Health course at Tufts University School of Medicine used Design Thinking to formulate a digital solution to promote brain health among older adults in the United States (US). Older adults (aged 65 and over) are a growing population in the US, with many having one or more chronic health conditions including hypertension. Nearly half of all American adults ages 50-64 worry about memory loss as they age and almost all (90%) wish to maintain independence and age in their homes. Given the well-studied association between hypertension and dementia, we designed a solution that would ultimately promote brain health among older adults by allowing them to measure and record their blood pressure readings at home on a regular basis. Going through each step in the Design Thinking process, we devised MyHealthNetwork, an application which connects to a smart blood pressure cuff and stores users' blood pressure readings in a digital dashboard which will alert users if readings are outside of the normal range. The dashboard also has a physician view where users' data can be reviewed by the physician and allow for shared treatment decisions. The authors developed a novel algorithm to visually display the blood pressure categories in the dashboard in a way straightforward enough that users with low health literacy could track and understand their blood pressure over time. Additional features of the dashboard include educational content about brain health and hypertension, a digital navigator to support users with application use and technical questions. Phase 1 in the development of our application includes a pilot study involving recruitment of Primary Care Providers with patients who are at risk of dementia to collect and monitor BP data with our prototype. Subsequent phases of development involve partnerships to provide primary users with a rewards program to promote continued use, additional connections to secondary users such as family members and expansion to capture other health metrics.

Self-Reported Changes and Perceived Barriers to Healthy Eating and Physical Activity among Global Breast Cancer Survivors: Results from an Exploratory Online Novel Survey.

BACKGROUND: Despite being motivated to improve nutrition and physical activity behaviors, cancer survivors are still burdened by suboptimal dietary intake and low levels of physical activity. OBJECTIVE: The aim of this study was to assess changes in nutrition and physical activity behaviors after cancer diagnosis or treatment, barriers to eating a healthy diet and staying physically active, and sources for seeking nutrition advice reported by breast cancer survivors. DESIGN: This was a cross-sectional study. PARTICIPANTS/SETTING: The study included 315 survivors of breast cancer who were recruited through social media and provided completed responses to an online exploratory survey. MAIN OUTCOME MEASURES: Self-reported changes in nutrition and physical activity behaviors after cancer diagnosis or treatment, perceived barriers to healthy eating and physical activity, and sources of nutrition advice were measured. STATISTICAL ANALYSIS: Frequency distribution of nutrition and physical activity behaviors and changes, barriers to healthy eating and physical activity, and sources of nutrition advice were estimated. RESULTS: About 84.4% of the breast cancer survivors reported at least 1 positive behavior for improving nutrition and physical activity after cancer diagnosis or treatment. Fatigue was the top barrier to both making healthy food choices (72.1%) and staying physically active (65.7%), followed by stress (69.5%) and treatment-related changes in eating habits (eg, change in tastes, loss of appetite, and craving unhealthy food) (31.4% to 48.6%) as barriers to healthy eating, and pain or discomfort (53.7%) as barriers to being physically active. Internet search (74.9%) was the primary source for seeking nutrition advice. Fewer than half reported seeking nutrition advice from health care providers. CONCLUSIONS: Despite making positive changes in nutrition and physical activity behaviors after cancer diagnosis or treatment, breast cancer survivors experience treatment-related barriers to eating a healthy diet and staying physically active. Our results reinforce the need for developing tailored intervention programs and integrating nutrition into oncology care.

Feasibility of a twitter campaign to promote HPV vaccine uptake among racially/ethnically diverse young adult women living in public housing.

BACKGROUND: Uptake and completion of the HPV vaccine is suboptimal. This study assessed the feasibility of implementing a one-month Twitter campaign to promote knowledge about the human papillomavirus (HPV) vaccine among low-income women living in public housing. METHODS: We recruited a convenience sample (n = 35) of women ages 18-26 years residing in low-come, public housing in Massachusetts. We assessed the feasibility and acceptability of a communication campaign that consisted of daily Twitter messages. Online surveys assessed changes in HPV knowledge, attitudes, and vaccine intentions before and after the campaign. RESULTS: Most believed that Twitter was an acceptable educational strategy and remained engaged with the campaign throughout the intervention. We observed no changes in HPV knowledge, perceived benefits of or barriers to vaccination, decision self-efficacy, or vaccine intentions after the campaign, although perceived risk for cervical cancer decreased. CONCLUSIONS: Twitter may be a feasible and acceptable method for promoting knowledge about the HPV vaccine, but more research is needed to understand how best to reach low-income women with low levels of vaccine uptake. TRIAL REGISTRATION: Clinicaltrials.gov 1,603,045, retrospectively registered 0610/19.

Potential of Using Twitter to Recruit Cancer Survivors and Their Willingness to Participate in Nutrition Research and Web-Based Interventions: A Cross-Sectional Study.

BACKGROUND: Social media is rapidly changing how cancer survivors search for and share health information and can potentially serve as a cost-effective channel to reach cancer survivors and invite them to participate in nutrition intervention programs. OBJECTIVE: This study aimed to assess the feasibility of using Twitter to recruit cancer survivors for a web-based survey and assess their willingness to complete web-based nutrition surveys, donate biospecimens, and to be contacted about web-based nutrition programs. METHODS: We contacted 301 Twitter accounts of cancer organizations, advocates, and survivors to request assistance promoting a web-based survey among cancer survivors. The survey asked respondents whether they would be willing to complete web-based nutrition or lifestyle surveys, donate biospecimens, and be contacted about web-based nutrition programs. Survey promotion rate was assessed by the percentage of Twitter accounts that tweeted the survey link at least once. Survey response was assessed by the number of survey respondents who answered at least 85% (26/30). We compared the characteristics of cancer survivors who responded to this survey with those who participated in the National Health and Nutrition Examination Survey (NHANES) 1999-2010 and evaluated factors associated with willingness to complete web-based surveys, donate biospecimens, and be contacted to participate in web-based nutrition programs among those who responded to the social media survey. RESULTS: Over 10 weeks, 113 Twitter account owners and 165 of their followers promoted the survey, and 444 cancer survivors provided complete responses. Two-thirds of respondents indicated that they would be willing to complete web-based nutrition or lifestyle surveys (297/444, 67.0%) and to be contacted to participate in web-based nutrition interventions (294/444, 66.2%). The percentage of respondents willing to donate biospecimens were 59.3% (263/444) for oral swab, 52.1% (231/444) for urine sample, 37.9% (168/444) for blood sample, and 35.6% (158/444) for stool sample. Compared with a nationally representative sample of 1550 cancer survivors in NHANES, those who responded to the social media survey were younger (53.1 years vs 60.8 years; P<.001), more likely to be female (93.9% [417/444] vs 58.7% [909/1550]; P<.001), non-Hispanic whites (85.4% [379/444] vs 64.0% [992/1550]; P<.001), to have completed college or graduate school (30.1 [133/444] vs 19.9% [308/444]; P<.001), and to be within 5 years of their initial diagnosis (55.2% [244/444] vs 34.1% [528/1550]; P<.001). Survivors younger than 45 years, female, and non-Hispanic whites were more willing to complete web-based nutrition surveys than older (65+ years), male, and racial or ethnic minority survivors. Non-Hispanic whites and breast cancer survivors were more willing to donate biospecimens than those with other race, ethnicity or cancer types. CONCLUSIONS: Twitter could be a feasible approach to recruit cancer survivors into nutrition research and web-based interventions with potentially high yields. Specific efforts are needed to recruit survivors who are older, male, racial and ethnic minorities, and from socioeconomically disadvantaged groups when Twitter is used as a recruitment method.

Can a Free Wearable Activity Tracker Change Behavior? The Impact of Trackers on Adults in a Physician-Led Wellness Group.

BACKGROUND: Wearable activity trackers (trackers) are increasingly popular devices used to track step count and other health indicators. Trackers have the potential to benefit those in need of increased physical activity, such as adults who are older and face significant health challenges. These populations are least likely to purchase trackers and most likely to face challenges in using them, yet may derive educational, motivational, and health benefits from their use once these barriers are removed. OBJECTIVE: The aim of this pilot research is to investigate the use of trackers by adults with chronic medical conditions who have never used trackers previously. Specifically, we aim to determine (1) if participants would accept and use trackers to increase their physical activity; (2) if there were barriers to use besides cost and training; (3) if trackers would educate participants on their baseline and ongoing activity levels and support behavior change; and (4) if clinical outcomes would show improvements in participants' health. METHODS: This study was conducted with patients (N=10) in a 12-week physician-led wellness group offered by Family Doctors, LLC. Patients were given trackers in the second week of The Wellness Group and were interviewed 2 to 4 weeks after it ended. The study investigators analyzed the interview notes to extract themes about the participants' attitudes and behavior changes and collected and analyzed participants' clinical data, including weight and low-density lipoprotein (LDL) cholesterol over the course of the study. RESULTS: Over the 12 to 14 weeks of tracker use, improvements were seen in clinical outcomes, attitudes towards the trackers, and physical activity behaviors. Participants lost an average of 0.5 lbs per week (SD 0.4), with a mean total weight loss of 5.97 lbs (P=.004). Other short-term clinical outcomes included a 9.2% decrease in LDL levels (P=.038). All participants reported an increase in well-being and confidence in their ability to lead more active lives. We identified the following 6 major attitudinal themes from our qualitative analysis of the interview notes: (1) barriers to tracker purchase included cost, perceived value, and choice confusion; (2) attitudes towards the trackers shifted for many, from half of the participants expressing excitement and hope and half expressing hesitation or trepidation, to all participants feeling positive towards their tracker at the time of the interviews; (3) trackers served as educational tools for baseline activity levels; (4) trackers provided concrete feedback on physical activity, which motivated behavior change; (5) tracker use reinforced wellness group activities and goals; and (6) although commitment to tracker use did not waver, external circumstances influenced some participants' ongoing use. CONCLUSIONS: Our findings suggest that adding trackers to wellness groups comprising primarily older adults with chronic medical conditions can support education and behavior change to be more physically active. The trackers increased participant self-efficacy by providing a tangible, visible reminder of a commitment to increasing activity and immediate feedback on step count and progress towards a daily step goal. While acceptance was high and attitudes ultimately positive, training and support are needed and short-term drop-off in participant use is to be expected. Future research will further consider the potential of trackers in older adults with chronic medical conditions who are unlikely to purchase them, and studies will use larger samples, continue over a longer period of time, and evaluate outcomes independent of a wellness group.

Communicating the experience of chronic pain and illness through blogging.

BACKGROUND: Although more individuals are sharing their experiences with chronic pain or illness through blogging (writing an Internet web log), research on the psychosocial effects and motivating factors for initiating and maintaining a blog is lacking. OBJECTIVE: The objective was to examine via online questionnaire the perceived psychosocial and health benefits of blogging among patients who use this media to communicate their experience of chronic pain or illness. METHODS: A 34-item online questionnaire was created, tested, and promoted through online health/disease forums. The survey employed convenience sampling and was open from May 5 to July 2, 2011. Respondents provided information regarding demographics, health condition, initiation and upkeep of blogs, and dynamics of online communication. Qualitative data regarding respondents' blogging experiences, expectations for blogging, and the perceived effects from blogging on the blogger's health, interpersonal relationships, and quality of life were collected in the form of written narrative. RESULTS: Out of 372 respondents who started the survey, 230 completed the entire questionnaire. Demographic data showed survey respondents to be predominantly female (81.8%) and highly educated (97.2% > high school education and 39.6% with graduate school or professional degrees). A wide spectrum of chronic pain and illness diagnoses and comorbidities were represented. Respondents reported that initiating and maintaining an illness blog resulted in increased connection with others, decreased isolation, and provided an opportunity to tell their illness story. Blogging promoted accountability (to self and others) and created opportunities for making meaning and gaining insights from the experience of illness, which nurtured a sense of purpose and furthered their understanding of their illness. CONCLUSIONS: Results suggest that blogging about chronic pain and illness may decrease a sense of isolation through the establishment of online connections with others and increases a sense of purpose to help others in similar situations. Further study involving a larger sample size, a wider range of education levels, and respondents with different types and magnitudes of illnesses will be needed to better elucidate the mechanism of the observed associations in this understudied area.

The potential for social media to educate farm families about health and safety for children.

Social media has the potential to reach farm families to educate them about health and safety for children. It offers advantages over traditional approaches because of the shorter time between creation and distribution and because of the greater reach and engagement possible. Recommendations are provided for how government agencies and the private sector can learn about and use social media to promote health and safety for children as a supplement to traditional approaches.

The Internet as a health information source: findings from the 2007 Health Information National Trends Survey and implications for health communication.

A wealth of health information is available online, but we do not fully understand the implications for health communication. This study examined whether health information seekers who turn to the Internet first differ from those who turn elsewhere. Data from the 2,338 respondents to the mail portion of the National Cancer Institute's Health Information National Trends Survey (HINTS) 2007 who reported looking for health information for themselves were analyzed. Logistic regression was used to examine whether health information seekers turning to the Internet first differed in terms of demographics, information preferences and seeking confidence, and communication with providers from those using other sources. In the final model, Internet users were younger, more educated, higher income, preferred numbers rather than words to describe chance, and think it is very important to get personal medical information electronically. There were no differences in terms of gender, health status, confidence seeking health information, or communication with providers. Health information seekers who turn to the Internet first are different, both in terms of demographics and information preferences. As the use of communication technologies increases, health communicators need to be attentive to the potential for communication inequalities.

A diet high in saturated fat and cholesterol accelerates simian immunodeficiency virus disease progression.

Several lines of evidence suggest that dietary fat and cholesterol may play a role in the pathogenesis of human immunodeficiency virus (HIV) infection and disease progression. We examined the effect that an atherogenic diet (AD) high in saturated fatty acids and cholesterol has on disease progression and systemic inflammation in the simian immunodeficiency virus (SIV)-infected macaque model of acquired immunodeficiency syndrome. Macaques fed an AD had significantly more rapid disease progression, resulting in an increased risk of SIV-related death compared with that in control macaques (hazard ratio, 5.4 [95% confidence interval, 1.7-17.0]; P<.001). Peak viral load was higher in the AD group compared with control values, but further statistically significant differences were not detected at viral set point. The baseline plasma interleukin-18 level after 6 months of the AD was predictive of disease progression. Our findings may have important implications for HIV-infected individuals, because they suggest that dietary changes and manipulation of lipid metabolism could offer potential benefits by slowing disease progression.

The effect of micronutrient supplementation on disease progression and death in simian immunodeficiency virus-infected juvenile male rhesus macaques.

BACKGROUND: We investigated the impact that micronutrient supplementation has on the progression of simian acquired immunodeficiency syndrome (SAIDS). METHODS: Twenty-four simian immunodeficiency virus-infected juvenile male rhesus macaques were randomized into 2 groups. One group was given certified chow, and the other group was given chow and a supplement that contained 2-3 times the estimated nutritional requirement of micronutrients. Virological, immunological, and body composition measurements were taken every 4 weeks for 120 weeks. RESULTS: There was no difference between groups in weight gain, body mass index (BMI), crown-heel length, waist circumference, total tissue mass, lean mass, bone mineral content, or bone mineral density. The rhesus macaques on the supplemented diet had a higher death rate (hazard ratio, 2.39; P<.001) than those on the nonsupplemented diet; death in both groups was associated with a higher viral load set point during the early phase of infection. Additionally, higher body weight, BMI, crown-rump length, and lower viral load set point were protective from death in both groups. CONCLUSIONS: Micronutrient supplementation did not significantly alter the progression of SAIDS with respect to changes in body composition and immunological characteristics. A significantly higher rate of death was observed in rhesus macaques on the supplemented diet.

Body-composition changes in the simian immunodeficiency virus-infected juvenile rhesus macaque.

BACKGROUND: Body-composition changes are common in individuals infected with human immunodeficiency virus. The purpose of the present study was to measure, as a model of wasting in acquired immunodeficiency syndrome (AIDS), longitudinal body-composition changes in macaques infected with simian immunodeficiency virus (SIV). METHODS: Twelve juvenile macaques were inoculated with SIVmac239. Immunologic, virologic, somatometric, and dual-energy x-ray-absorptiometry measurements were performed prospectively every 4 weeks for 72 weeks and were compared to measurements taken from 8 uninfected control macaques. RESULTS: During the first 4 weeks, body-fat percentage decreased in the SIV-infected macaques while lean-tissue percentage increased; during weeks 4-72, these macaques lost a greater percentage of total fat tissue but had more subcutaneous-fat deposition than did the uninfected control macaques. Just prior to death, the SIV-infected macaques that died (n=7) had a greater loss in body-mass index, abdominal fat, fat tissue, and lean tissue, compared with that in SIV-infected macaques that survived (n=5). CONCLUSIONS: Body-composition changes in SIV-infected juvenile macaques exhibit 3 phases: during acute infection, loss of body weight from fat tissue; a compensation period during which macaques grow, but at a reduced rate; and a terminal phase, during which tissue is lost from all body compartments. The SIV-infected juvenile macaque provides a useful model for the investigation of wasting in AIDS, particularly for pediatric AIDS wasting.