Health General Practitioners Research Articles

Preventing cardiovascular disease in at-risk patients: Results of a pilot behavioural health programme in general practice

Background The ‘High-Risk Prevention Programme’ (HRPP) involved a six-week health behaviour change programme based in general practices and aimed to address cardiovascular disease (CVD) risk in disadvantaged Irish communities. Objectives This pilot study aimed to establish the HRPP’s likely effectiveness and acceptability to inform the development of a future definitive trial. Methods The HRPP was conducted at six general practices in disadvantaged areas in the Ireland East region. Patients with high CVD risk were recruited by participating practices and were allocated to either a General Practice Nurse (GPN) or Health Promotion Professional (HPP) led programme focusing on positive health behavioural change. Baseline and 12-month follow-up data were collected to capture the HRPP’s likely effectiveness in promoting health outcomes and health behavioural change. Results The HRPP programme was completed by 270 patients. Out of these 270 patients, 245 (90.74%) completed baseline assessments, and 176 (65.19%) completed follow-up assessments at 12 months. Baseline data indicated a high level of CVD risk among patients and follow-up demonstrated positive change in several areas, especially weight (−1.95 kg, p < 0.001), BMI (−0.72, p < 0.001), exercise during the last week ( p <0.001), and consumption of healthy fats in the HPP group (+60%, p < 0.001). Conclusion The HRPP was a much-needed pilot intervention, and positive results were seen in both GPN and HPP arms, especially with regards to weight loss, exercise, and dietary improvements. Future definitive trials of the HRPP are likely to be effective and acceptable in terms of combatting these issues among high-risk patients.

Using System Dynamics for Local Authority Public Health practice in England

A key function of local authority public health teams in England is to undertake a regular health needs assessment of their population. This involves forecasting, among other things, prevalence and incidence of long term conditions and health care service demand. Over the last few years, Kent County Council Public Health has adopted the use of system dynamics modelling (SDM) to not only do this but generate scenarios to simulate the impact of different interventions across different cohorts defined by age groups and diagnosable conditions. These include “no conditions” as well as understand the combined effects of different interventions, demographic changes and wider health determinants. Risk factors, such as smoking, diet and physical activity, were calculated using local linked data for the incidence of single conditions, progression toward complex needs and levels of morbidity including frailty. These were used to create the dynamics of the model. Incidence, prevalence and mortality for each cohort were projected over 25 years with “do nothing” and “Better Health” scenarios. The size of the “no conditions” cohort increased, and the other cohorts decreased in size. The impact of the interventions on life expectancy at birth and healthy life expectancy was significant. SDM heavily influenced local authority commissioning decisions for health improvement services redesign such as smoking cessation, weight management as well as other secondary prevention measures such as hypertension management and cardiovascular disease screening delivered by General Practice and other health service partners.

General practitioners’ perspectives on data linkage in Australian general practice

ObjectiveIn the rapidly evolving landscape of digital health, data sharing using primary health care records has gained prominence. Linking primary care data with other administrative health datasets has the potential to provide a whole-of-life perspective on the patient journey and improve health outcomes. This study aimed to gain insight into Australian General Practitioners' (GPs) perspectives on the use of general practice health records for research and data linkage. ApproachThe study employed a mixed-methods approach. We conducted semi-structured interviews with GPs who had little experience of data sharing, focusing on understanding the challenges and opportunities that increased data sharing poses. We also conducted a three-round modified Delphi study with GPs with experience of and interest in research and data sharing to refine recommendations for data sharing using general practice data. ResultsIn this paper we describe the findings from both arms of the study and compare their recommendations to contribute to a nuanced understanding of general practitioners’ views on data linkage and sharing in general practice. Conclusions and ImplicationsBridging the knowledge gap between novices and expert practitioners, the findings will inform policies, practices, and initiatives to address the ethical, legal and social implications of data sharing in general practice settings in Australia.

Designing the Australian Cancer Atlas: visualizing geostatistical model uncertainty for multiple audiences.

The Australian Cancer Atlas (ACA) aims to provide small-area estimates of cancer incidence and survival in Australia to help identify and address geographical health disparities. We report on the 21-month user-centered design study to visualize the data, in particular, the visualization of the estimate uncertainty for multiple audiences. The preliminary phases included a scoping study, literature review, and target audience focus groups. Several methods were used to reach the wide target audience. The design and development stage included digital prototyping in parallel with Bayesian model development. Feedback was sought from multiple workshops, audience focus groups, and regular meetings throughout with an expert external advisory group. The initial scoping identified 4 target audience groups: the general public, researchers, health practitioners, and policy makers. These target groups were consulted throughout the project to ensure the developed model and uncertainty visualizations were effective for communication. In this paper, we detail ACA features and design iterations, including the 3 complementary ways in which uncertainty is communicated: the wave plot, the v-plot, and color transparency. We reflect on the methods, design iterations, decision-making process, and document lessons learned for future atlases. The ACA has been hugely successful since launching in 2018. It has received over 62000 individual users from over 100 countries and across all target audiences. It has been replicated in other countries and the second version of the ACA was launched in May 2024. This paper provides rich documentation for future projects.

The endometriosis nurse coordinator – A new paradigm for endometriosis multidisciplinary care: a commentary

Endometriosis is a chronic, systemic condition that predominates across the reproductive lifespan of individuals. People with endometriosis and chronic pelvic pain require treatment and long-term management from a range of specialists outside of gynaecology. When establishing our centre of excellence for endometriosis (Melbourne, Australia), our vision was to create a patient-centred, bespoke and accessible multidisciplinary clinic with coordination and ongoing support led by a specialist endometriosis nurse. In our first 12-months, our endometriosis nurses provided 388 episodes of care and referred to a diverse network of specialist and allied health providers (frequently, gynaecologists, pain specialists, women’s health general practitioners, pelvic floor physiotherapists, expert pelvic imaging providers and pain psychologists). We strongly believe that a nurse-led multidisciplinary clinic is a feasible and effective clinical model for endometriosis care.

Attitudes of the general population and mental health practitioners towards blended therapy in Austria.

Mental health problems are steadily increasing worldwide. In Austria, the overall supply of mental health services is low, especially in rural areas. Mobile technology and ablended care approach have the potential to overcome problems with service provision. The aim of this study was to map the attitudes of practitioners and people living in Austria towards blended therapy. Two individual online questionnaires (including the Unified Theory of Acceptance and Use of Technology, advantages and disadvantages, useful features) were distributed to practitioners and the general population in Austria. The questionnaires were answered by 152 members of the general public and 129 practitioners. The general population and practitioners seem to be cautious, but slightly positive about blended therapy. Previous experience of practitioners with blended therapy was low. Practitioners are most worried about the therapeutic process and their work-life balance, while the general population is worried about being overwhelmed by the concept, mainly due to the time investment. Tracking, recording and reminding functions (e.g., for mood, homework) were seen as especially valuable features and accessibility was deemed the biggest advantage by both samples. Practitioners' attitudes are important for implementation of blended therapy. More awareness might help against the cautiousness as well as implementing digital health applications in Austrian health policies.

Maintenance of peri-implant health in general dental practice

The long-term maintenance or restoration of peri-implant tissues‘ health depends on the strategic implementation of preventive measures and interventions. These measures should be initiated before implant placement and continued throughout a patient's lifetime, as part of a tailored and comprehensive supportive peri-implant care (SPIC) programme. Central to the clinical efforts of maintaining and rehabilitating peri-implant tissues are several key factors, including the ongoing assessment and frequent monitoring of tissue health and stability, proactive oral health promotion, the control of risk factors and indicators and the provision of professional plaque biofilm removal. It is of paramount importance to underline that SPIC should not limit its scope exclusively to patients already in a state of peri-implant health; in fact, it is imperative that it should extend its protective effect to individuals who have been previously diagnosed and treated for peri-implant diseases, focusing on preventing its recurrence and progression, thereby avoiding further complications, such as implant loss.This narrative review presents an overview of the current literature on the maintenance of peri-implant tissues‘ health and the steps of SPIC providing insights into the critical factors to be considered when managing dental implant patients in the general dental practice.

The Primary Care and Environmental Health e-Learning Course to Integrate Environmental Health in General Practice: Before-and-After Feasibility Study.

Environmental and behavioral factors are responsible for 12.6 million deaths annually and contribute to 25% of deaths and chronic diseases worldwide. Through the One Health initiative, the World Health Organization and other international health organizations plan to improve these indicators to create healthier environments by 2030. To meet this challenge, training primary care professionals should be the priority of national policies. General practitioners (GPs) are ready to become involved but need in-depth training to gain and apply environmental health (EH) knowledge to their practice. In response, we designed the Primary Care Environment and Health (PCEH) online course in partnership with the Occitanie Regional Health Agency in France. This course was used to train GP residents from the Montpelier-Nimes Faculty of Medicine in EH knowledge. The course was organized in 2 successive parts: (1) an asynchronous e-learning modular course focusing on EH knowledge and tools and (2) 1 day of face-to-face sessions. This study assessed the impact of the e-learning component of the PCEH course on participants' satisfaction, knowledge, and behavior changes toward EH. This was a pilot before-and-after study. Four modules were available in the 6-hour e-learning course: introduction to EH, population-based approach (mapping tools and resources), clinical cases, and communication tools. From August to September 2021, we recruited first-year GP residents from the University of Montpellier (N=130). Participants' satisfaction, knowledge improvements for 19 EH risks, procedure to report EH risks to health authorities online, and behavior change (to consider the possible effects of the environment on their own and their patients' health) were assessed using self-reported questionnaires on a Likert scale (1-5). Paired Student t tests and the McNemar χ2 test were used to compare quantitative and qualitative variables, respectively, before and after the course. A total of 74 GP residents completed the e-learning and answered the pre- and posttest questionnaires. The mean satisfaction score was 4.0 (SD 0.9) out of 5. Knowledge scores of EH risks increased significantly after the e-learning course, with a mean difference of 30% (P<.001) for all items. Behavioral scores improved significantly by 18% for the participant's health and by 26% for patients' health (P<.001). These improvements did not vary significantly according to participant characteristics (eg, sex, children, place of work). The e-learning course improved knowledge and behavior related to EH. Further studies are needed to assess the impact of the PCEH course on clinical practice and potential benefits for patients. This course was designed to serve as a knowledge base that could be reused each year with a view toward sustainability. This course will integrate new modules and will be adapted to the evolution of EH status indicators and target population needs.

Diabetes and Oral Health: A Review

A healthy mouth is important for everyone, but high blood sugar can make it harder to keep mouth healthy. Diabetes mellitus is a major source of morbidity and mortality and a global epidemic that should be taken very seriously. Diabetes Mellitus is a chronic, non-communicable metabolic disease characterized by abnormalities in insulin production, action, or both. The prevalence of diabetes mellitus, a prevalent systemic disease, is rising in the modern world. Diabetes is a prevalent illness that has an effect on dental care due to its concurrent oral symptoms. This review aims to provide an overview of diabetes prevalence, symptoms, diagnosis, and treatment options, along with dental care considerations for those with the condition. The general population and people who have diabetes have demonstrated an unacceptable level of awareness regarding the bidirectional association between diabetes mellitus and general oral health, while physicians and dental practitioners have a satisfactory level of understanding.

A comparison of the original major depression inventory with a modified version: A Danish validation study.

The Major Depression Inventory (MDI) is a patient-reported outcome measure used by general practitioners to assist with diagnosing and evaluation of the severity of a patient's depression. However, recent studies have questioned the structural validity of the MDI. We proposed a modified version (mMDI) of the MDI with fewer response categories and four rephrased items and aimed to compare the psychometric properties of the changes in a joint cohort of patients from general practice and mental health associations. We used Rasch analysis, confirmatory factor analysis, and the area under the receiver operating curve (AUROC) to assess the validity and reliability of the two versions. Equipercentile linking was used to compute cut-off points for the mMDI. For both versions, local dependence was found between the three item pairs (loss of interest, lack of energy), (lack of self-confidence, feelings of guilt), and (concentration problems, feeling restless/slowed down). The mMDI displayed lower measurement error in the upper end of the scale and better item level fit for three of the four reformulated items compared to the MDI. For the MDI, 5.3% of the respondents gave improbable responses; the corresponding number was 3.4% for the mMDI. The mMDI displayed better fit to a one-factor model compared to the MDI. When comparing the correlation of the scales with the WHO-5 instrument, the corresponding AUROC estimates for the mMDI and MDI were found to be 0.93 (0.92; 0.96) and 0.91 (0.87; 0.94), respectively. The cut-off points for mild, moderate, and severe depression in the mMDI were found to be 17, 20, and 23, respectively. The proposed changes of the MDI are psychometrically sound upgrades of the original.

The role of an artificial intelligence model in antiretroviral therapy counselling and advice for people living with HIV.

People living with HIV may find personalized access to accurate information on antiretroviral therapy (ART) challenging given the stigma and costs potentially associated with attending physical consultations. Artificial intelligence (AI) chatbots such as ChatGPT may help to lower barriers to accessing information addressing concerns around ART initiation. However, the safety and accuracy of the information provided remains to be studied. We instructed ChatGPT to answer questions that people living with HIV frequently ask about ART, covering i) knowledge of and access to ART; ii) ART initiation, side effects, and adherence, and iii) general sexual health practices while receiving ART. We checked the accuracy of the advice against international HIV clinical practice guidelines. ChatGPT answered all questions accurately and comprehensively. It recognized potentially life-threatening scenarios such as abacavir hypersensitivity reaction and gave appropriate advice. However, in certain contexts, such as specific geographic locations or for pregnant individuals, the advice lacked specificity to an individual's unique circumstances and may be inadequate. Nevertheless, ChatGPT consistently re-directed the individual to seek help from a healthcare professional to obtain targeted advice. ChatGPT may act as a useful adjunct in the process of ART counselling for people living with HIV. Improving access to information on and knowledge about ART may improve access and adherence to ART and outcomes for people living with HIV overall.

Determining the Impact of Opioid Policy on Substance Use and Mental Health-Related Harms: Protocol for a Data Linkage Study.

Increasing harms related to prescription opioids over the past decade have led to the introduction of a range of key national and state policy initiatives across Australia. These include introducing a mandatory real-time prescription drug-monitoring program in the state of Victoria from April 2020 and a series of changes to subsidies for opioids on the Pharmaceutical Benefit Scheme from June 2020. Together, these changes aim to influence opioid supply and reduce harms related to prescription opioids, yet few studies have specifically explored how these policies have influenced opioid prescribing and related harms in Australia. The aim of this study is to examine the impact of a range of opioid-related policies on hospital admissions and emergency department (ED) presentations in Victoria, Australia. In particular, the study aims to understand the effect of various opioid policies and opioid-prescribing changes on (1) the number and rates of ED presentations and hospital admissions attributed to substance use (ie, opioid and nonopioid related) or mental ill-health (eg, suicide, self-harm, anxiety, and depression), (2) the association between differing opioid dose trajectories and the likelihood of ED presentations and hospital admissions related to substance use and mental ill-health, and (3) whether changes in an individual's opioid prescribing change the risk related to ED presentations and hospital admissions related to substance use and mental ill-health. We will conduct a population-level linked data study. General practice health records obtained from the Population Level Analysis and Reporting platform are linked with person-level data from 3 large hospital networks in Victoria, Australia. Interrupted time series analysis will be used to examine the impact of opioid policies on a range of harms, including the rates of presentations related to substance use (opioid and nonopioid) and mental ill-health among the primary care cohort. Group-based trajectory modeling and a case-crossover design will be used to further explore the impact of changes in opioid dosage and other covariates on opioid and nonopioid poisonings and mental ill-health-related presentations at the patient level. Given that this paper serves as a protocol, there are currently no results available. The deidentified primary health data were sourced from electronic medical records of approximately 4,717,000 patients from 542 consenting general practices over a 6-year period (2017-2022). The submission of results for publication is planned for early 2024. This study will add to the limited evidence base to help understand the impact of opioid policies in Australia, including whether intended or unintended outcomes are occurring as a result. EU PAS Register EUPAS104005; https://www.encepp.eu/encepp/viewResource.htm?id=104006. DERR1-10.2196/51825.

What is integrative medicine? Establishing the decision criteria for an operational definition of integrative medicine for general practice health services research in Australia

BackgroundOperational definitions outline how a conceptual definition will be measured for consistent, reproducible data collection and analysis. This article reports the decision criteria that will be used for an operational definition of integrative medicine (IM) in a secondary analysis of an Australian national survey of general practitioner activity. MethodsA multidisciplinary team applied an iterative approach, informed by expert knowledge and literature reviews to establish decision criteria for categorizing the terms in the Australian clinical interface terminology of the International Classification of Primary Care, second edition (ICPC-2 PLUS) and the Coding Atlas for Pharmaceutical Substances, according to whether they reflected IM, conventional/mainstream medicine (MM), or both IM and MM (IM/MM). ResultsThe final decision criteria categorized all terms for examinations, investigations, advice/counselling, and drugs with synthetic ingredients, and terms for referrals to secondary care services and healthcare practitioners that are not a traditional or complementary medicine practitioner as MM. Terms that could apply to both styles of clinical practice (e.g., preventive health, lifestyle medicine, psychosocial and some drugs with natural ingredients) were categorised as IM/MM. The remaining terms, that mostly reflected the World Health Organization's theoretical definitions of traditional and complementary medicine, were categorized as IM. ConclusionDifferentiating between integrative and conventional/mainstream medicine in general practice is context specific and not always possible. The category IM/MM proposes integrative medicine as an extension, rather than an alternative. The rationale for the integrative medicine operational definition has relevance for researchers and health services in Australia, and internationally.

Understanding primary care perspectives on supporting women's health needs: a qualitative study.

A consultation for the Women's Health Strategy for England in 2022 highlighted a need to understand and develop how general practice can support women's health needs. To understand the perspectives and experiences of primary care practitioners (PCPs) about supporting women's healthcare needs. Interpretive qualitative research set in general practice in England. PCPs working in general practice settings were recruited through research and professional networks. Semi-structured interviews were conducted via telephone or Microsoft Teams, audiorecorded, transcribed verbatim, and analysed through reflexive thematic analysis. In total, 46 PCPs were interviewed. Participants had a range of roles and worked in a variety of primary care settings. Results are presented within six themes: 1) being alongside a person from cradle to grave; 2) maintaining the balance between general and specialist skills; 3) generalists and specialists combined make more than the sum of their parts; 4) striving for equity in a collapsing system; 5) firefighting with limited resources; and 6) the GP is being cast as the villain. The findings show that relationships and advocacy are valued as fundamental for women's health in general practice, and highlight the adverse impact of threats to these on staff and services. Developing specialist roles and bespoke services can foster staff wellbeing and could support retention. However, care is needed to ensure that service configuration changes do not result in clinician deskilling or rendering services inaccessible. Care is needed when services evolve to ensure that core aspects of general practice are not diminished or devalued. GP teams are well placed to advocate for their patients, including commitment to seeking equitable care, and these skills and specialist knowledge should be actively recognised, valued, and nurtured.

'Hold the course(s)!' - a qualitative interview study of the impact of pandemic-triggered contact restrictions on online instruction in community-based family medicine teaching.

The COVID-19 pandemic has been identified as a catalyst for the digitalization of medical education. Less is known about the specific impact of the pandemic on decentralized, community-based education, such as in General Practitioner practices. The aim of this study is to understand the impact of the digital transformation process, triggered by the COVID-19 pandemic. As, family medicine courses involve both university-based and community-based teaching, this study focuses the mode and quality of instruction and instructors in family medicine teaching. A qualitative interview study was conducted. The participants (N = 12) of a multi-perspective Quality Circle in family medicine teaching were interviewed twice: first, in 2019, about digitalization in family medicine teaching in Tübingen, Germany, not yet aware of the global changes and local transformation that would take place shortly thereafter. Second, in a follow-up interview in 2020 about the transition process and digitalization following the impact of contact restrictions during the pandemic. Grounded Theory was used as a qualitative research approach to analyze the complex processes surrounding this transformation. By analyzing the interviews with various stakeholders of community and university-based teaching, a model for the digital transformation process of family medicine teaching at the University of Tübingen in response to an external stimulus (the pandemic) was developed. It involves six chronological steps: "The calm before the storm," "The storm hits," "All hands on deck," "Adrift," "Reset course," and "The silver lining." This model seeks to understand the process of digital transformation and its impact on the teaching institution (medical faculty of the University of Tübingen, Institute for General Practice and Interprofessional Health Care) and instructors from an integrated perspective and thereby critically revisits prior concepts and opinions on the digitalization of medical teaching. Insights gained are presented as key messages.

Exploring disease interrelationships in older inpatients: a single-centre, retrospective study.

Comorbidity is a common phenomenon in the older population; it causes a heavy burden on societies and individuals. However, the relevant evidence, especially in the southwestern region of China, is insufficient. We aimed to examine current comorbidity characteristics as well as correlations among diseases in individuals aged >60 years. Retrospective study. We included records of 2,995 inpatients treated at the Gerontological Department of Sichuan Geriatric Hospital from January 2018 to February 2022. The patients were divided into groups according to sex and age. Diseases were categorised based on the International Classification of Diseases and their Chinese names. We calculated the age-adjusted Charlson Comorbidity Index (ACCI), categorised diseases using the China Health and Retirement Longitudinal Study questionnaire, and visualised comorbidity using web graphs and the Apriori algorithm. The ACCI was generally high, and it increased with age. There were significant differences in the frequency of all diseases across age groups, especially in individuals aged ≥90 years. The most common comorbid diseases were liver diseases, stomach or other digestive diseases, and hypertension. Strong correlations between the most common digestive diseases and hypertension were observed. Our findings provide insights into the current situation regarding comorbidity and the correlations among diseases in the older population. We expect our findings to inform future research directions as well as policies regarding general clinical practice and public health, especially for medical consortiums.

Navigating the grey zone in the response to child abuse and neglect in primary healthcare settings

BackgroundChild abuse and neglect (child abuse) is a common issue that leads to significant health issues. Given the association between child abuse and health, mandatory reporting laws for doctors and nurses were introduced in jurisdictions such as the US, Canada and Australia. However, this legislation is not globally or nationally consistent. Thus, there is confusion surrounding the definition of abuse that should be reported and how to respond when suspicion does not meet the threshold of Child Protection. It is unclear as to how health professionals navigate the response to child abuse in light of this confusion. PurposeTo explore how Australian GPs and nurses navigate their response to child abuse and neglect in primary healthcare settings. MethodsTwenty-two Australian GPs and eight nurses were sampled from: private general practice and community health clinics; and Doctors in Secondary Schools, an initiative in the Australian state of Victoria that places GPs and nurses in high schools. We conducted 26 in-depth individual and group interviews. The interviews were audio-recorded, transcribed verbatim and analyzed thematically. Principal ResultsWe generated three themes: negotiating the threshold; mismatching expectations; and practising in the grey area. Participants engaged in a process of negotiating between their immediate colleagues, with families, and with statutory Child Protection authorities. When participants decided to make a report, they were met with a response from Child Protection that did not match their expectations. This led to feelings of distrust directed towards Child Protection authorities which left participants to manage patients within a ‘Grey Zone’. While practising in the Grey Zone, participants attempted to create an emotionally safe space for patients and engage in practical strategies that responded to patient vulnerabilities. Major ConclusionsWe recommend that training interventions be aimed at supporting practice within the Grey Zone and that threshold be made clearer in legal and occupational policy.

Communication about weight-related issues with adult patients with obesity in general practice: A scoping review.

Primary care providers see patients with obesity in general practice every day but may be challenged regarding communication about obesity. The research question of this study is: how do general practitioners and general practice staff and adult patients with obesity communicate about weight-related issues? A scoping review approach was used, searching PubMed, Scopus and CINAHL for peer-reviewed studies - of both quantitative and/or qualitative study designs, and published between 2001 and 2021. Twenty articles were included. The weight-related issues discussed were by far physical issues, and only one study mentioned psychosocial issues. Most of the included studies contained information on who initiates the communication, how the weight-related issues are addressed and handled, and also obstacles and challenges in relation to the communication. The studies lacked information of when the weight-related issues are addressed and differences in views and experiences when discussing weight-related issues in general practice. Studies with the main focus communication about obesity and overall health in general practice are needed. Findings also indicate, that non-stigmatizing communication tools and guidelines are needed on this area to promote these types of conservations.

Primary healthcare needs and service utilisation of people with disability: a data linkage protocol

IntroductionGeneral practitioners (GPs) play a crucial role in the early management and treatment of the comorbidities and complications experienced by people with disability. However, GPs experience multiple constraints, including limited...

"YOU CAN'T SEE IT BUT IT'S A MATTER OF LIFE AND DEATH". OF PLATFORMS, POWER, AND THE INVISIBLE

We investigate the interplay of platform mechanisms and user tinkering in relation to invisible health conditions and ultimately challenge approaches that picture platforms as either hegemonic or liberating. We draw on initial findings from a project focused on social media uses relevant to hereditary cancer syndromes. These conditions are invisible in at least three ways. Cancer genetic risk is evidence-based and embodied, but not bodily visible. General health practitioners rarely know about hereditary cancer syndromes. Overall, hereditary cancer syndromes have not yet entered the wider collective imagination. Existing research provides evidence that individuals with these conditions turn to social media to seek, learn, produce and share information. However, little do we know about how these practices form at the intersection of embodied experiences, everyday social media uses, and platform mechanisms. In this paper we explore these dynamics drawing on a social media analysis that incorporates data from Twitter, Facebook, TikTok, and Instagram and combines computational and ethnographic techniques. When it comes to invisible health conditions, the voice of ordinary social media users easily overcomes that of traditional elites. Local platform mechanisms differently shape how information is shared and who and what become more visible and credentialed in these sharing practices. They also influence how and which personal experiences are more curated and shared. These initial findings suggest that social media platforms are essential in making the invisible visible but raise questions on how participating in one or more platforms’ “local worlds” might affect the lived experience of those who embody this invisible.