“You Get Reminded You’re a Sick Person”: Personal Data Tracking and Patients With Multiple Chronic Conditions

Background

Consumer health information technologies (HIT) that encourage self-tracking, such as diet and fitness tracking apps and disease journals, are attracting widespread interest among technology-oriented consumers (such as “quantified self” advocates), entrepreneurs, and the health care industry. Such electronic technologies could potentially benefit the growing population of patients with multiple chronic conditions (MCC). However, MCC is predominantly a condition of the elderly and disproportionately affects the less affluent, so it also seems possible that the barriers to use of consumer HIT would be particularly severe for this patient population.

Objective

Our aim was to explore the perspectives of individuals with MCC using a semistructured interview study. Our research questions were (1) How do individuals with MCC track their own health and medical data? and (2) How do patients and providers perceive and use patient-tracked data?

Methods

We used semistructured interviews with patients with multiple chronic diseases and providers with experience caring for such patients, as well as participation in a diabetes education group to triangulate emerging themes. Data were analyzed using grounded theory and thematic analysis. Recruitment and analysis took place iteratively until thematic saturation was reached.

Results

Interviews were conducted with 22 patients and 7 health care providers. The patients had an average of 3.5 chronic conditions, including type 2 diabetes, heart disease, chronic pain, and depression, and had regular relationships with an average of 5 providers. Four major themes arose from the interviews: (1) tracking this data feels like work for many patients, (2) personal medical data for individuals with chronic conditions are not simply objective facts, but instead provoke strong positive and negative emotions, value judgments, and diverse interpretations, (3) patients track for different purposes, ranging from sense-making to self-management to reporting to the doctor, and (4) patients often notice that physicians trust technologically measured data such as lab reports over patients’ self-tracked data.

Conclusions

Developers of consumer health information technologies for data tracking (such as diet and exercise apps or blood glucose logs) often assume patients have unlimited enthusiasm for tracking their own health data via technology. However, our findings potentially explain relatively low adoption of consumer HIT, as they suggest that patients with multiple chronic illnesses consider it work to track their own data, that the data can be emotionally charged, and that they may perceive that providers do not welcome it. Similar themes have been found in some individual chronic diseases but appeared more complex because patients often encountered “illness work” connected to multiple diseases simultaneously and frequently faced additional challenges from aging or difficult comorbidities such as chronic pain, depression, and anxiety. We suggest that to make a public health impact, consumer HIT developers should engage creatively with these pragmatic and emotional issues to reach an audience that is broader than technologically sophisticated early adopters. Novel technologies are likely to be successful only if they clearly reduce patient inconvenience and burden, helping them to accomplish their “illness work” more efficiently and effectively.     

To Use or Not to Use – Practitioners’ Perceptions of an Open Web Portal for Young Patients With Diabetes

Background

Health care professionals'' attitudes can be a significant factor in their acceptance and efficient use of information technology, so they need to have more knowledge about this resource to enhance their participation.

Objective

We explored practitioners’ perceptions of using an open-access interactive Web portal tailored to young diabetes type 1 patients and their guardians or significant others. The portal offered discussion forums, blog tools, self-care and treatment information, research updates, and news from local practitioners.

Methods

Eighteen professionals who were on pediatric diabetes care teams each wrote an essay on their experience using the portal. For their essays, they were asked to describe two situations, focusing on positive and negative user experiences. The essays were analyzed using qualitative content analysis.

Results

Based on our analysis of the respondents essays, we identified three categories that describe perceptions of the Web portal. The first category - to use or not to use - included the different perspectives of the practioners; those who questioned the benefits of using the Web portal or showed some resistance to using it. The frequency of use among the practitioners varied greatly. Some practitioners never used it, while others used it on a daily basis and regularly promoted it to their patients. Some respondents in this category reflected on the benefits of contributing actively to online dialogues. In the second category - information center for everyone – practitioners embraced the site as a resource for scientifically sound information and advice. As part of their practice, and as a complement to traditional care, practitioners in this category described sending information through the portal to patients and their significant others. Practitioners felt safe recommending the site because they knew that the information provided was generated by other practitioners. They also assumed that their patients benefited from actively using the Web portal at home: peers brought the site to life by exchanging experiences through the discussion forums. In the third category – developing our practice – practitioners reflected upon the types of information that should be given to patients and how to give it (ie, during in-person appointments or through the Web portal). They perceived meeting with various professionals at other hospitals to update information on the portal and develop content policies as constructive teamwork. Practitioners expressed interest in reading patients’ dialogues online to learn more about their views. They also thought about how they could use the portal to adapt more to patients’ needs (eg, creating functions so patients could chat with the diabetes nurses and doctors).

Conclusions

Practitioners expressed positive perceptions toward a tailored open Web portal. They suggested that future benefits could be derived from systems that integrate factual information and online dialogues between practitioners and patients (ie, exchanging information for everyone’s benefit).     

“You Have No Good Blood in Your Body”. Oral Communication in Sixteenth-Century Physicians’ Medical Practice

In his personal notebooks, the little known Bohemian physician Georg Handsch (1529–c. 1578) recorded, among other things, hundreds of vernacular phrases and expressions he and other physicians used in their oral interaction with patients and families. Based primarily on this extraordinary source, this paper traces the terms, concepts and images to which sixteenth-century physicians resorted when they explained the nature of a patient’s disease and justified their treatment. At the bedside and in the consultation room, Handsch and his fellow physicians attributed most diseases to a local accumulation of impure, putrid or otherwise pathological humours. The latter were commonly said to result, in turn, from an insufficient concoction and assimilation of food and drink in the stomach and the liver or from an obstruction of the humoral flow inside the body and across its borders. By contrast, other notions and explanatory models, which had a prominent place in contemporary learned medical writing, hardly played a role at all in the physicians’ oral communication. Specific disease terms were rarely used, a mere imbalance of the four natural humours in the body was almost never inculpated, and the patient’s personal life-style and other non-naturals did not attract much attention either. These striking differences between the ways in which physicians explained the patients’ diseases in their daily practice and the explanatory models we find in contemporary textbooks, are attributed, above all, to the physicians’ precarious situation in the early modern medical marketplace. Since dissatisfied patients were quick to turn to another healer, physicians had to explain the disease and justify their treatment in a manner that was comprehensible to ordinary lay people and in line with their expectations and beliefs, which, at the time, revolved almost entirely around notions of impurity and evacuation.     

Caspases as Therapeutic Targets in Alzheimer’s Disease: Is It Time to “Cut” to the Chase?

Mounting evidence suggests the involvement of caspases in the disease process associated with Alzheimer’s disease (AD). The activation of caspases may be responsible for the neurodegeneration associated with AD and several recent studies have suggested that caspases may also play a role in promoting pathogenic mechanisms underlying this disease. Thus, caspase activation and cleavage of the amyloid precursor protein (APP) and tau may facilitate both the production of beta-amyloid (Aβ) as well as the formation of neurofibrillary tangles (NFTs). Because the activation of caspases in AD may be a proximal event that is not just associated with neurodegeneration, caspases are potential therapeutic targets for the treatment of this disorder. In this review, studies documenting the role of caspases in the AD brain will be discussed. In this context, a discussion of the therapeutic value of targeting caspase inhibition in the treatment of AD will be evaluated including drug targets, delivery and selectivity.     

Click “Like” to Change Your Behavior: A Mixed Methods Study of College Students’ Exposure to and Engagement With Facebook Content Designed for Weight Loss

Background

Overweight or obesity is prevalent among college students and many gain weight during this time. Traditional face-to-face weight loss interventions have not worked well in this population. Facebook is an attractive tool for delivering weight loss interventions for college students because of its popularity, potential to deliver strategies found in successful weight loss interventions, and ability to support ongoing adaptation of intervention content.

Objective

The objective of this study was to describe participant exposure to a Facebook page designed to deliver content to overweight/obese college students in a weight loss randomized controlled trial (N=404) and examine participant engagement with behavior change campaigns for weight loss delivered via Facebook.

Methods

The basis of the intervention campaign model were 5 self-regulatory techniques: intention formation, action planning, feedback, goal review, and self-monitoring. Participants were encouraged to engage their existing social network to meet their weight loss goals. A health coach moderated the page and modified content based on usage patterns and user feedback. Quantitative analyses were conducted at the Facebook post- and participant-level of analysis. Participant engagement was quantified by Facebook post type (eg, status update) and interaction (eg, like) and stratified by weight loss campaign (sequenced vs nonsequenced). A subset of participants were interviewed to evaluate the presence of passive online engagement or “lurking.”

Results

The health coach posted 1816 unique messages to the study’s Facebook page over 21 months, averaging 3.45 posts per day (SD 1.96, range 1-13). In all, 72.96% (1325/1816) of the posts were interacted with at least once (eg, liked). Of these, approximately 24.75% (328/1325) had 1-2 interactions, 23.39% (310/1325) had 3-5 interactions, 25.13% (333/1325) had 6-8 interactions, and 41 posts had 20 or more interactions (3.09%, 41/1325). There was significant variability among quantifiable (ie, visible) engagement. Of 199 participants in the final intervention sample, 32 (16.1%) were highly active users and 62 (31.2%) never visibly engaged with the intervention on Facebook. Polls were the most popular type of post followed by photos, with 97.5% (79/81) and 80.3% (386/481) interacted with at least once. Participants visibly engaged less with posts over time (partial r=–.33; P<.001). Approximately 40% of the participants interviewed (12/29, 41%) reported passively engaging with the Facebook posts by reading but not visibly interacting with them.

Conclusions

Facebook can be used to remotely deliver weight loss intervention content to college students with the help of a health coach who can iteratively tailor content and interact with participants. However, visible engagement with the study’s Facebook page was highly variable and declined over time. Whether the level of observed engagement is meaningful in terms of influencing changes in weight behaviors and outcomes will be evaluated at the completion of the overall study.     

“I don’t want to be Henrietta Lacks”: diverse patient perspectives on donating biospecimens for precision medicine research

PurposeTo determine whether patients distinguish between biospecimens and electronic health records (EHRs) when considering research participation to inform research protections.MethodsWe conducted 20 focus groups with individuals who identified as African American, Hispanic, Chinese, South Asian, and non-Hispanic white on the collection of biospecimens and EHR data for research.ResultsOur study found that many participants did not distinguish between biospecimens and EHR data. However, some participants identified specific concerns about biospecimens. These included the need for special care and respect for biospecimens due to enduring connections between the body and identity; the potential for unacceptable future research, specifically the prospect of human cloning; heightened privacy risks; and the potential for unjust corporate profiteering. Among those who distinguished biospecimens from EHR data, many supported separate consent processes and would limit their own participation to EHR data.ConclusionConsidering that the potential misuse of EHR data is as great as, if not greater than, for biospecimens, more research is needed to understand how attitudes differ between biospecimens and EHR data across diverse populations. Such research should explore mechanisms beyond consent that can address diverse values, perspectives, and misconceptions about sources of patient information to build trust in research relationships.     

“You are already all you need to be”: A case illustration of compassion-focused therapy for shame and perfectionism

This paper presents the case of a 28-year-old woman diagnosed with major depressive disorder, with strong features of perfectionism, shame, and self-criticism, treated via 12 sessions of compassion-focused therapy (CFT). CFT is an integrative therapeutic approach that draws upon evolutionary psychology, attachment theory, and applied psychological processes from neuroscience, clinical and social psychology. The effectiveness of compassion focused approaches with perfectionism and self-criticism across a range of clinical disorders is becoming increasingly well-established. Given this mounting evidence, a four-phase, 12-session CFT treatment plan was developed for this case: (1–2) establishing the therapeutic relationship; (3–4) psychoeducation regarding the evolutionary model of compassion; (5–8) compassionate mind training and skills development; (9–11) working with perfectionism, shame, and self-criticism. A follow-up session focused on envisioning a compassionate future. Therapeutic process and clinical outcome will be discussed, as well as implications for using CFT in clinical practice, especially where perfectionism, shame, and self-criticism are part of the clinical presentation.     

“Unfortunately,I don’t have an answer for you”: How resident physicians communicate diagnostic uncertainty to patients during emergency department discharge

ObjectiveTo describe how emergency medicine resident physicians discuss diagnostic uncertainty during a simulated ED discharge discussion.MethodsA secondary content analysis of simulated clinical encounter audiotapes completed by emergency medicine residents across two sites.ResultsWhen discussing lack of diagnosis, residents explained the evaluation revealed no cause for symptoms, noted concerning diagnoses that were excluded, and acknowledged both symptoms and patients’ feelings. Residents used explicit and implicit language to discuss diagnostic uncertainty with similar frequency. Almost half of the residents discussed the ED role as focused on emergent illness to give patients context for their uncertain diagnoses. However, 28% of residents in this study did not discuss diagnostic uncertainty in any form. All residents provided reassurance.ConclusionResidents use a range of approaches to discuss diagnostic uncertainty with patients at the time of a simulated ED discharge, with some residents omitting discussion of uncertainty entirely.Practice implicationsThese findings represent the current state of communication, which needs improvement. These findings do not immediately transfer to clinical practice recommendations, but rather support a need for both further study and development of formal communication training on this topic.     

“F*ck It! Let’s Get to Drinking—Poison our Livers!”: a Thematic Analysis of Alcohol Content in Contemporary YouTube MusicVideos

Purpose

The purpose of the present study is to describe the portrayal of alcohol content in popular YouTube music videos.

Method

We used inductive thematic analysis to explore the lyrics and visual imagery in 49 UK Top 40 songs and music videos previously found to contain alcohol content and watched by many British adolescents aged between 11 and 18 years and to examine if branded content contravened alcohol industry advertising codes of practice.

Results

The analysis generated three themes. First, alcohol content was associated with sexualised imagery or lyrics and the objectification of women. Second, alcohol was associated with image, lifestyle and sociability. Finally, some videos showed alcohol overtly encouraging excessive drinking and drunkenness, including those containing branding, with no negative consequences to the drinker.

Conclusion

Our results suggest that YouTube music videos promote positive associations with alcohol use. Further, several alcohol companies adopt marketing strategies in the video medium that are entirely inconsistent with their own or others agreed advertising codes of practice. We conclude that, as a harm reduction measure, policies should change to prevent adolescent exposure to the positive promotion of alcohol and alcohol branding in music videos.

     

“I didn’t know you were such a good cook”: Photos as a tool for primary care clinician-patient communication

ObjectivesTo examine audio-recorded primary care interactions with patient-initiated photo sharing around food and diet choices.MethodsData were 13 audio recordings of primary care visits with English-, Chinese-, or Spanish-speaking patients 60+ with two or more chronic conditions. Patients and clinicians completed pre-intervention surveys and some training on photo-taking / photo-sharing discussion. Data were analyzed using discourse analysis.ResultsPhoto-based communication interactions lasted 3:34?28:37 min and averaged one-third of the visit. Clinicians and patients both initiated the photo-based talk and transition to other topics occurred smoothly. In eight of 13 interactions, the photo-based communication task was raised, but conversation did not occur at that moment. When discussed, the photos raised opportunities to talk about patient’s decision-making which led to dietary suggestions including clinical nutrition suggestions and referrals to other specialty clinics.ConclusionPhoto-based communication in primary care can be used to promote patient activation and facilitate collaborative decision making that accounts for the patients’ lived experiences and lifeworld.Practice implicationsBy setting the agenda early, clinicians or patients can designate the photo-sharing as a relevant part of the visit. Photos may be most relevant as part of the problem presentation, diagnosis, or treatment recommendation sections of the visit.     

“It’s something I’ve committed to longer term”: The impact of an immersion program for physicians on adoption of genomic medicine

ObjectiveTo foster implementation of genomic testing in medical care by providing a cadre of physicians with ‘hands on’ experience in genomics, positioning them as opinion leaders in their medical speciality. This paper presents qualitative evaluation of immediate outcomes, in particular its impact on peer interactions.MethodsProgram design and delivery was informed by implementation science, behavior change and experiential learning theories.Inductive content analysis of transcribed audio-recordings from semi-structured post-project interviews with all participants (n = 12) was conducted.ResultsParticipants reported the immersion experience improved their genomic capability, established them as credible genomic experts within their speciality and altered their practice in genomic medicine. Participants reported strengthening and widening of peer-to-peer and interdisciplinary communication, with both passive diffusion and active dissemination of information to peers. Some also became a resource for genetic professionals.ConclusionsGenomic immersion participants described elements which support sustained integration of an innovation, including immediate changes (e.g. use of genomic tests) and wider impacts (e.g. professional networks).Practice implicationsThis study supports a role for immersion as a successful strategy for enhancing engagement of non-geneticist physicians in genomics. Additional study is needed to understand how immersion experiences change the delivery of genomic services at the provider, practice and health system level.     

AAI predicts patients’ in-session interpersonal behavior and discourse: a “move to the level of the relation” for attachment-informed psychotherapy research

There is currently little empirical evidence regarding how patients’ attachment patterns manifest in individual psychotherapy. This study compared the in-session discourse of patients classified secure, dismissing, and preoccupied on the Adult Attachment Interview (AAI). Rather than focusing on content or form alone, this study analyzed how patients’ discourse elicits and maintains emotional proximity with the therapist. The AAI was administered to 56 patients prior to treatment and one session for each patient was rated with the Patient Attachment Coding System (PACS) by four independent raters, blind to patients’ AAI classification. Significant differences were found in the discourse of patients with different attachment patterns. Namely, secure and preoccupied patients showed more contact-seeking behavior than dismissing patients, who avoided emotional proximity more, while preoccupied patients resisted therapists’ help more than did secure and dismissing patients. These results suggest that the different attachment patterns may have distinctive manifestations in the psychotherapy process that can be tracked by external observers.