Practical guide to implementing patient-reported outcome measures in gender-affirming care: evaluating acceptability, appropriateness and feasibility.

OBJECTIVE: Assess acceptability, appropriateness and feasibility of the Practical Guide to Implementing patient-reported outcome measures (PROMs) in Gender-Affirming Care (PG-PROM-GAC) from a sample of patients and healthcare professionals. DESIGN: Cross-sectional study conducted August-October 2023. SETTING: Participants were recruited from a National Health Service (NHS) gender clinic. PARTICIPANTS: Patient participants seeking care and healthcare professionals working at an NHS gender clinic were eligible for participation. The PG-PROM-GAC was sent to participants via email for review. OUTCOME MEASURES: Three validated tools to measure acceptability, appropriateness and feasibility were administered: the acceptability of intervention measure (AIM), intervention appropriateness measure (IAM) and feasibility of intervention measure (FIM). The percentage of participants indicating agreement or disagreement with items on the AIM, IAM and FIM was calculated. RESULTS: A total of 132 transgender and gender diverse (TGD) patients (mean age, SD: 33, 14) and 13 gender-affirming healthcare professionals (mean age, SD: 43, 11) completed the AIM, IAM and FIM, representing a range of gender identities. The cumulative percentage of patients indicating agree or strongly agree on the AIM, IAM and FIM for the patient-relevant strategies in the PG-PROM-GAC was over 50% for each item. The cumulative percentage of patients indicating disagree or strongly disagree on the AIM, IAM and FIM for the PG-PROM-GAC was less than 20% for each item. The cumulative percentage of healthcare professionals indicating agree or strongly agree on the AIM, IAM and FIM for the healthcare professional-relevant strategies in the PG-PROM-GAC was over 38% for each item. The cumulative percentage of healthcare professionals indicating disagree or strongly disagree on the AIM, IAM and FIM for the PG-PROM-GAC was less than 15% for each item. CONCLUSIONS: Gender-affirming healthcare professionals and TGD patients find the PG-PROM-GAC acceptable, appropriate and feasible. The PG-PROM-GAC is ready-to-use for clinicians, policy-makers and researchers committed to service improvement for gender-affirming care.

Implementing strategies to improve uptake of patient-reported outcome measures (PROMs) in gender-affirming care: a mixed-methods implementation study.

IMPORTANCE: The Practical Guide to Implementing PROMs in Gender-Affirming Care (PG-PROM-GAC) is an evidence-based resource, which was developed in response to international calls for improved patient-reported outcome measure (PROM) implementation in gender-affirming care. The PG-PROM-GAC has the potential to improve PROM implementation; however, its real-world effectiveness has not yet been investigated. OBJECTIVE: Investigate effectiveness and fidelity of three implementation strategies from the PG-PROM-GAC in a real-world gender clinic setting. DESIGN: Interrupted time series mixed-methods study investigating response rates to a PROM deployed alongside implementation strategies from the PG-PROM-GAC; and open-ended feedback on the fidelity and effectiveness of implementation strategies. SETTING: Participants were recruited from a National Health Service (NHS) gender clinic. PARTICIPANTS: Eligible participants were being seen at an NHS gender clinic for an appointment during the study period, and were invited to participate in this study via email. INTERVENTION: Three implementation strategies from the PG-PROM-GAC deployed alongside a PROM. MAIN OUTCOMES AND MEASURES: Response rates were calculated at 2-week intervals, in line with the deployment of each implementation strategy. Open-ended responses were thematically analysed by two researchers following guidance from implementation science and interpretation from Normalisation Process Theory. RESULTS: A total of 28 participants were included in this study with a mean (SD) age of 39 (17) years. In general, participants rated education material for PROMs as the most important for PROM implementation, and accessibility options for PROMs as the second most important. Response rates to PROM completion dropped as the study progressed, as the burden of reviewing implementation strategies increased. Results were used to construct recommendations for future PROM implementation efforts. CONCLUSIONS AND RELEVANCE: The PG-PROM-GAC and implementation strategy materials developed from this study (ie, educational video on PROMs co-developed with key stakeholders) can be used by clinicians, researchers and policymakers to lead PROM implementation efforts in gender-affirming care.

Developing feasible and acceptable strategies for integrating the use of patient-reported outcome measures (PROMs) in gender-affirming care: An implementation study.

OBJECTIVE: Use CFIR guidance to create comprehensive, evidence-based, feasible, and acceptable gender-affirming care PROM implementation strategies. DESIGN, SETTING, PARTICIPANTS: A 3-Phase participatory process was followed to design feasible and acceptable strategies for integrating PROMs in gender-affirming care. In Phase 1, barriers and enablers to PROM implementation for gender-affirming care were identified from a previous systematic review and our prior qualitative study. We used the CFIR-ERIC tool to match previously identified barriers and enablers with expert-endorsed implementation strategies. In Phase 2, implementation strategy outputs from CFIR-ERIC were organised according to cumulative percentage value. In Phase 3, gender-affirming care PROM implementation strategies underwent iterative refinement based on rounds of stakeholder feedback with seven patient and public partners and a gender-affirming healthcare professional. RESULTS: The systematic review and qualitative study identified barriers and enablers to PROM implementation spanning all five CFIR domains, and 30 CFIR constructs. The top healthcare professional-relevant strategies to PROM implementation from the CFIR-ERIC output include: identifying and preparing implementation champions, collecting feedback on PROM implementation, and capturing and sharing local knowledge between clinics on implementation. Top patient-relevant strategies include: having educational material on PROMs, ensuring adaptability of PROMs, and collaborating with key local organisations who may be able to support patients. CONCLUSIONS: This study developed evidence-based, feasible, and acceptable strategies for integrating PROMs in gender-affirming care, representing evidence from a systematic review of 286 international articles, a qualitative study of 24 gender-affirming care patients and healthcare professionals, and iteration from 7 patient and public partners and a gender-affirming healthcare professional. The finalised strategies include patient- and healthcare professional-relevant strategies for implementing PROMs in gender-affirming care. Clinicians and researchers can select and tailor implementation strategies best applying to their gender-affirming care setting.

Patient and healthcare professional perspectives on the Practical Guide to Implementing PROMs in Gender-Affirming Care (PG-PROM-GAC): analysis of open-ended responses from patients and healthcare professionals.

IMPORTANCE: Several international calls have been made for evidence-based patient-reported outcome measure (PROM) implementation for gender-affirming care. The Practical Guide to Implementing PROMs in Gender-Affirming Care (PG-PROM-GAC) is a resource which can help guide PROM implementation efforts, developed using a three-phase participatory research approach with transgender and gender-diverse (TGD) patients and gender-affirming healthcare professionals. However, thoughts and perspectives from TGD patients and gender-affirming healthcare professionals on the PG-PROM-GAC need to be investigated. OBJECTIVE: Investigate patient and healthcare professional perspectives on the PG-PROM-GAC through analysis of open-ended survey results. DESIGN: Qualitative study analysing open-ended responses from TGD patients and gender-affirming healthcare professionals. SETTING: Participants were recruited from a UK National Health System (NHS) gender clinic. PARTICIPANTS: Patients receiving care at an NHS gender clinic and healthcare professionals working at an NHS gender clinic were eligible for participation. Eligible participants were invited to participate in this study via email. INTERVENTION: Participants were sent an open-ended survey to collect responses on the PG-PROM-GAC. MAIN OUTCOMES AND MEASURES: Data were thematically analysed by two independent researchers and interpreted following guidance from established methods in implementation science. RESULTS: A total of 64 TGD patients and 9 gender-affirming healthcare professionals responded to the open-ended survey (mean (SD) age: 35 (16) and 48 (8), respectively). Four main themes emerged from the data: overall opinions and support for the PG-PROM-GAC, presentation of the PG-PROM-GAC, impact of gender clinic resources on PROM implementation and impact of PROM selection on implementation. Data were used to iterate the PG-PROM-GAC in response to participant feedback. CONCLUSIONS AND RELEVANCE: The PG-PROM-GAC is an acceptable and feasible resource that can be used by clinicians, researchers and policymakers to guide PROM implementation for gender-affirming care settings, helping to align gender-affirming care with patient needs.

Patient and healthcare professional perspectives on implementing patient-reported outcome measures in gender-affirming care: a qualitative study.

OBJECTIVES: Patient and healthcare professional perspectives are needed to develop a gender-affirming care patient-reported outcome measure (PROM) implementation plan. We aimed to identify top considerations relevant to gender-affirming care PROM implementation from patient and healthcare professional perspectives. DESIGN, SETTINGS AND PARTICIPANTS: This qualitative study conducted in the UK between January and April 2023 includes focus groups with a patient sample diverse in age and gender identity, and a healthcare professional sample diverse in age and role. Established methods in implementation science and the Consolidated Framework for Implementation Research were used to create interview guides, and analyse data. Focus groups were audio recorded, transcribed verbatim and analysed by two independent researchers. Patient and healthcare professional focus groups were conducted separately. PRIMARY OUTCOME MEASURES: Patient and healthcare professional perspectives on PROM implementation were explored through focus groups and until data saturation. RESULTS: A total of 7 virtual focus groups were conducted with 24 participants (14 patients, mean (SD) age, 43 (14.5); 10 healthcare professionals, mean (SD) age, 46 (11.3)). From patient perspectives, key barriers to PROM implementation were mistrust with PROMs, lack of accessibility, burden, and lack of communication on why PROMs are important and how they will help care. From healthcare professional perspectives, key barriers to PROM implementation were lack of accessibility, burden with PROM administration and scoring, costs of implementation (financial and time), and lack of communication on what PROMs are and how they benefit service provision. CONCLUSION: Gender-affirming care PROM implementation must address: patient mistrust with PROMs, accessibility, communication on what PROMs are and how they can be used, reducing burden, and hybridised implementation. These factors may also be applicable to other clinical areas interested in implementing PROMs.

Developing evidence-based patient-focused learning materials to support health behaviour change for people living with psoriatic arthritis.

OBJECTIVES: In psoriatic arthritis (PsA), self-management is important for patient function and quality of life. Behaviour change can be difficult, patients could benefit from high-quality support to initiate change. Our aim was to codesign the project as theory-informed, evidence-based, patient-focused, materials supporting healthy lifestyle changes for patients diagnosed with PsA. METHODS: Development of the materials was overseen by a steering group of patients with PsA, psychologists, rheumatologists, a design team and researchers. First, a literature review was performed to establish the evidence base for behaviours and potential interventions in PsA, including diet, weight, alcohol, smoking, exercise, anxiety, depression and stress. An initial roundtable of patients with PsA prioritised areas and content ideas. Draft materials including a website and downloadable materials were produced. A second roundtable of patients with PsA collected feedback on the draft content and design. A third roundtable was held with patients with PsA and a fourth with clinicians to refine the materials and ensuring that they were evidence based, accessible, interesting, and helpful to initiate and maintain change. A final evaluation survey was performed to review the draft website before launching the final materials. RESULTS: 15 candidate topics were prioritised. A website and set of postcards summarising the topics were developed by the design team and refined following feedback from the roundtable groups. CONCLUSION: This project created patient-focused resources to support behaviour change. It addresses common concerns of patients with PsA about how they may optimise their health by providing practical and brief interventions to challenge and support them to make changes.

Implementation of Patient-Reported Outcome Measures for Gender-Affirming Care Worldwide: A Systematic Review.

Importance: Gender-affirming care is a key clinical area that can benefit from implementation of patient-reported outcome measures (PROMs). Identifying barriers to and enablers of PROM implementation is needed to develop an evidence-based implementation strategy. Objective: To identify (1) PROMs previously implemented for gender-affirming care and constructs measured, (2) how patients completed PROMs and how results were reported and used, and (3) barriers to and enablers of PROM implementation. Evidence Review: In this systematic review, PubMed, Embase, MEDLINE, PsycINFO, CINAHL, and Web of Science were searched from inception to October 25, 2021, and updated on December 16, 2022. Gray literature was searched through gray literature database, online search engine, and targeted website searching. Inclusion criteria were (1) original articles of (2) a formally developed PROM or ad hoc instrument administered for gender-affirming care to (3) patients accessing gender-affirming care. The Critical Appraisal Skills Programme tool was used to evaluate quality of included studies. This review was registered on PROSPERO (CRD42021233080). Findings: In total, 286 studies were included, representing 85 395 transgender and nonbinary patients from more than 30 countries. A total of 205 different PROMs were used in gender-affirming care. No studies described using an implementation science theory, model, or framework to support PROM deployment. Key barriers to PROM implementation included issues with evidence strength and quality of the PROM, engaging participants, and PROM complexity. Key enablers of PROM implementation included using PROMs validated for gender-affirming care, implementing PROMs able to be deployed online or in person, implementing PROMs that are shorter and reduce patient burden, engaging key stakeholders and participants as part of developing an implementation plan, and organizational climate. Conclusions and Relevance: In this systematic review of barriers to and enablers of PROM implementation in gender-affirming care, PROM implementation was inconsistent and did not follow evidence-based approaches in implementation science. There was also a lack of patient input in creating implementation strategies, suggesting a need for patient-centered approaches to PROM implementation. Frameworks created from these results can be used to develop evidence-based PROM implementation initiatives for gender-affirming care and have potential generalizability for other clinical areas interested in implementing PROMs.

Implementation of significant mental health service change: perceptions and concerns of a mental health workforce in the context of transformation.

PURPOSE: As part of an evaluation of the nationally mandated Child and Adolescent Mental Health Services (CAMHS) "transformation" in one foundation NHS trust, the authors explored the experiences of mental health staff involved in the transformation. DESIGN/METHODOLOGY/APPROACH: The authors employed a qualitative methodology and followed an ethnographic approach. This included observation of mental health staff involved in the transformation and informal interviews (80 h). The authors also undertook semi-structured interviews with key staff members (n = 16). Data were analysed thematically. FINDINGS: The findings fall into three thematic areas around the transformation, namely (1) rationale; (2) implementation; and (3) maintenance. Staff members were supportive of the rationale for the changes, but implementation was affected by perceived poor communication, resulting in experiences of unpreparedness and de-stabilisation. Staff members lacked time to set up the necessary processes, meaning that changes were not always implemented smoothly. Recruiting and retaining the right staff, a consistent challenge throughout the transformation, was crucial for maintaining the service changes. ORIGINALITY/VALUE: There is little published on the perceptions and experiences of mental health workforces around the CAMHS transformations across the UK. This paper presents the perceptions of mental health staff, whose organisation underwent significant "transformational" change. Staff demonstrated considerable resilience in the change process, but better recognition of their needs might have improved retention and satisfaction. Time for planning and training would enable staff members to better develop the processes and resources necessary in the context of significant service change. Developing ways for services to compare changes they are implementing and sharing good practice around implementation with each other are also vital.

Health professionals' identified barriers to trans health care: a qualitative interview study.

BACKGROUND: Trans and gender-diverse people face multiple barriers within health care. Primary care practitioners are key to providing health care to trans and gender-diverse people but they often lack training in, and understanding of, trans identities and healthcare options. Few studies have examined health professionals' understanding of the barriers that exist in health care for trans and gender-diverse people. AIM: To map out barriers to providing good-quality health care to trans and gender-diverse people, and explore ways to address them. DESIGN AND SETTING: A qualitative interview study involving 20 health professionals working with young trans and gender-diverse people. METHOD: Participants were recruited through purposive and snowball sampling. Data were generated using semi-structured qualitative interviews. A thematic analysis involved coding and categorising data using NVivo (version 12) software and further conceptual analysis in which developing themes were identified. RESULTS: Four barrier domains to good-quality care for trans and gender-diverse people were identified: structural (related to lack of guidelines, long waiting times, and shortage of specialist centres); educational (based on lack of training on trans health); cultural and social (reflecting negative attitudes towards trans people); and technical (related to information systems and technology). CONCLUSION: There is an urgent need to address the barriers trans and gender-diverse people face in health care. Structural-level solutions include health policy, professional education, and standards; at the practice level, GPs can act as potential drivers of change in addressing the cultural and technical barriers to better meet the needs of their trans and gender-diverse patients.

How does reorganisation in child and adolescent mental health services affect access to services? An observational study of two services in England.

BACKGROUND: Child and Adolescent Mental Health Services (CAMHS) in England are making significant changes to improve access and effectiveness. This 'transformation' variously involves easier access to services through a Single Point of Access (SPA), more integrated services within CAMHS and enhanced co-provision across education and third sector or non-profit organisations. METHODS: A mixed-methods observational study was conducted to explore the process and impact of transformation over four years in two services. Ethnographic observations and in-depth interviews were conducted and Electronic Patient Records with over one million contacts analysed. Difference-in-differences analysis with propensity score matching to estimate the causal impact of the transformation on patient access was utilised. OUTCOMES: Spend and staffing increased across both CAMHS. The SPA had growing rates of self-referral and new care pathways were seeing patients according to expected degree of psychopathology. Third sector partners were providing increasing numbers of low-intensity interventions. Although the majority of staff were supportive of the changes, the process of transformation led to service tensions. In the first year after transformation there was no change in the rate of new patients accessing services or new spells (episodes of care) in the services. However, by year three, the number of new patients accessing CAMHS was 19% higher (Incidence Rate Ratio: 1·19, CI: 1·16, 1·21) and the rate of new spells was 12% higher (Incidence Rate Ratio: 1·12, CI: 1·05, 1·20). INTERPRETATION: Transformation investment, both financial and intellectual, can help to increase access to CAMHS in England, but time is needed to realise the benefits of reorganisation.

Introducing a single point of access (SPA) to child and adolescent mental health services in England: a mixed-methods observational study.

BACKGROUND: In many high-income countries, primary care practitioners are the main point of referral for specialist mental health services. In England, Child and Adolescent Mental Health Services (CAMHS) are increasingly adopting a Single Point of Access (SPA) to streamline referrals and introduce self and parent/carer-referrals. This involves a significant shift of responsibility from primary care towards CAMHS who adopt a more active role as gatekeeper for their service. This study evaluates the adoption of a SPA in CAMHS across a large region in England. METHODS: We conducted an observational mixed methods study in two CAMHS from January 2018 to March 2019 to evaluate the adoption of a SPA. We collected quantitative data from electronic patient records and qualitative data through ethnographic observation and in-depth interviews of staff and stakeholders with experience of using CAMHS. Additional data on volumes was shared directly from the SPAs and a further snapshot of 1 week's users was collected. RESULTS: A similar SPA model emerged across the two services. Staff were positive about what the model could achieve and access rates grew quickly following awareness-raising activities. Despite the initial focus being on a telephone line, online referrals became the more regularly used referral method. Increased access brought challenges in terms of resourcing, including identifying the right staff for the role of call handlers. A further challenge was to impose consistency on triage decisions, which required structured information collection during the assessment process. Similar to GP referrals, those self-referring via the SPA were mainly from the least deprived areas. CONCLUSIONS: The introduction of a SPA has the potential to improve young people's access to mental health services. By addressing some of the barriers to access, simplifying where to go to get help and making it easier to contact the service directly, a SPA can help more individuals and families access timely support. However, the introduction of a SPA does not in itself expand the capacity of CAMHS, and therefore expectations within services and across sectors need to be tempered accordingly. SPA services providing different referral approaches can further improve access for the harder to reach populations.

The importance of clinician, patient and researcher collaborations in Alport syndrome.

Alport syndrome is caused by mutations in the genes COL4A3, COL4A4 or COL4A5 and is characterised by progressive glomerular disease, sensorineural hearing loss and ocular defects. Occurring in less than 1:5000, Alport syndrome is a rare genetic disorder but still accounts for > 1% of the prevalent population receiving renal replacement therapy. There is also increasing awareness about the risk of chronic kidney disease in individuals with heterozygous mutations in Alport syndrome genes. The mainstay of current therapy is the use of angiotensin-converting enzyme inhibitors and angiotensin receptor blockers, yet potential new therapies are now entering clinical trials. The 2017 International Workshop on Alport Syndrome in Glasgow was a pre-conference workshop ahead of the 50th anniversary meeting of the European Society for Pediatric Nephrology. It focussed on updates in clinical practice, genetics and basic science and also incorporated patient perspectives. More than 80 international experts including clinicians, geneticists, researchers from academia and industry, and patient representatives took part in panel discussions and breakout groups. This report summarises the workshop proceedings and the relevant contemporary literature. It highlights the unique clinician, patient and researcher collaborations achieved by regular engagement between the groups.

GPs' and nurses' perceptions of electronic cigarettes in England: a qualitative interview study.

BACKGROUND: Reports from royal colleges and organisations such as Public Health England suggest that GPs and nurses should advise patients to switch to electronic cigarettes (e-cigarettes) if they do not want to stop smoking using licensed medication. However, there are no data on what practitioners think, feel, or do about e-cigarettes. AIM: To explore practitioners' perceptions and attitudes towards e-cigarettes, and their experiences of discussing e-cigarettes with patients. DESIGN AND SETTING: A qualitative interview study was carried out with semi-structured interviews conducted with nurses and GPs across England in 2017. METHOD: Participants were interviewed once either via telephone or face to face. Data were analysed using thematic analysis. RESULTS: Interviews were conducted with 23 practitioners (eight nurses and 15 GPs). There were three key themes: ambivalence and uncertainty; pragmatism; and responsibility. Many practitioners had uncertainties about the safety and long-term risks of e-cigarettes. Some had ambivalence about their own knowledge and ability to advise on their use, as well as uncertainty about whether to and what to advise patients. Despite this, many sought to provide honesty in consultations by acknowledging these uncertainties about e-cigarettes with patients and taking a pragmatic approach, believing that e-cigarettes were a 'step in the right direction'. Practitioners wanted advice from healthcare regulators such as the National Institute for Health and Care Excellence to reassure them about the safety of e-cigarettes, practical tools to support the consultation, and to control their use by providing behavioural support programmes for reduction or cessation. CONCLUSION: Current dissemination strategies for guidelines are not effective in reaching practitioners, who are offering more cautious advice about e-cigarettes than guidelines suggest is reasonable.

Understanding and evaluating new models of Child and Adolescent Mental Health Services in South-East England: a study protocol for an observational mixed-methods study.

INTRODUCTION: Increased demand for Child and Adolescent Mental Health Services (CAMHS), alongside concerns that services should be better commissioned to meet the needs of the most vulnerable, has contributed to a requirement to transform services to improve accessibility, quality of care and health outcomes. Following the submission of government-mandated transformation plans for CAMHS, services in England are changing in how, where and by whom they are delivered. This protocol describes the research methods to be applied to understand CAMHS transformations and evaluate the impact on the use of mental health services, patient care, satisfaction, health outcomes and health resource utilisation costs. METHODS AND ANALYSIS: A mixed-methods approach will be taken in an observational retrospective study of CAMHS provided by a large National Health Service (NHS) mental health trust in South-East England (Oxford Health NHS Foundation Trust). Quantitative research will include descriptive analysis of routinely collected data, with difference-in-differences analysis supplemented with propensity score matching performed to assess the impact of CAMHS transformations from 2015 onwards. An economic evaluation will be conducted from a healthcare perspective to provide commissioners with indications of value for money. Qualitative research will include observations of services and interviews with key stakeholders including CAMHS staff, service users and guardians, to help identify mechanisms leading to changes in service delivery, as well as barriers and enabling factors in this phase of transformation. ETHICS AND DISSEMINATION: This project has been registered with NHS Oxford Health Foundation Trust as a service evaluation. Informed consent will be sought from all stakeholders partaking in interviews according to good clinical practice. A local data sharing protocol will govern the transfer of quantitative data. Study findings will be published in professional journals for NHS managers and peer-reviewed scientific journals. They will be discussed in seminars targeting CAMHS providers, managers and commissioners and presented at scientific conferences.

A licence to drive? Neurological illness, loss and disruption.

The sense of freedom and independence that being able to drive generates may be taken for granted by many until it is threatened by illness. Drawing on the 'mobility turn' in social sciences that emphasises the social and emotional significance of the car (Sheller and Urry , ), this article presents secondary analysis of narratives of driving and its significance across four neurological conditions (epilepsy, Parkinson's disease, transient ischaemic attack and motor neurone disease). Taking an interactionist approach we explore how the withdrawal of a driving licence can represent not just a practical and emotional loss of independence, but also loss of enjoyment; of a sense and feeling of 'normal' adulthood and social participation; and of an identity (in some cases gendered) of strength and power. Conversely the ability to keep driving can maintain an unbroken thread of narrative, for example enabling people with speech difficulties to feel and look normal behind the wheel. Moments of pleasure and normality illuminate the importance of examining the micro-strands of disruption illness can cause.

The rise and fall of 'girlsdrinkdiaries.com': dilemmas and opportunities when creating online forums to investigate health behaviour.

This paper explores the potential dilemmas and opportunities for setting up online discussion forums when undertaking research on health-related behaviour. It draws on the setting up of a website called 'girlsdrinkdiaries.com' which sought to understand young women's relationship(s) with alcohol and their feelings about drinking and drunkenness. I reflect on how the use of virtual space may allow for more liberated and 'free' talk about sensitive topics in health, yet at the same time may create a voyeuristic and potentially abusive environment. In doing so, I explore the ultimate demise of the website and therefore the potential problems of utilising online methods. I suggest that researchers need to carefully mitigate and negotiate harm when considering such methods, whilst also acknowledging how participants themselves resist and negotiate risk in virtual places.