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Additional file 2. PRISMA Checklist.

Background\ud \ud Young people (age 16-25 years) with long term health conditions tend to disengage from health services resulting in poor health outcomes. They are prolific users of digital communications. Innovative UK National Health Service (NHS) clinicians use digital communication with these young people. The NHS plans to use digital communication with patients more widely.\ud \ud Objectives\ud \ud To explore how health care engagement can be improved using digital clinical communication; understand effects, impacts, costs and necessary safeguards; provide critical analysis of its use, monitoring and evaluation.\ud \ud Design\ud \ud Observational mixed methods case studies; systematic scoping literature reviews; assessment of patient reported outcome measures; public and patient involvement (PPI); consensus development through focus groups.\ud \ud Setting\ud \ud Twenty NHS specialist clinical teams from across England and Wales, providing care for 13 different long term physical or mental health conditions. \ud \ud Participants\ud \ud 165 young people aged 16-25 years living with a long term health condition; 13 parents; 173 clinical team members; 16 Information Governance Specialists.\ud \ud Interventions\ud \ud Clinical teams and young people variously used: mobile phone calls, text messages, email, Voice over Internet Protocol. \ud \ud Main outcome measures\ud \ud Empirical work: \ud \ud Thematic and ethical analysis of qualitative data; annual direct costs; Did Not Attend, Accident and Emergency Attendance and Hospital Admissions rates plus clinic specific clinical outcomes. Scoping reviews: patient, health professional and service delivery outcomes and technical problems. Patient reported outcome measures: scale validity, relevance and credibility.\ud \ud Data sources\ud \ud Observation, interview, structured survey, routinely collected data, focus groups, peer reviewed publications.\ud \ud Results\ud \ud Digital communication enables access for young people to the right clinician when it makes a difference for managing their health condition. This is valued as additional to traditional clinic appointments. This access challenges the nature and boundaries of therapeutic relationships but can improve them, increase patient empowerment and enhance activation. Risks include increased dependence on clinicians, inadvertent disclosure of confidential information and communication failures, but clinicians and young people mitigate these risks. Workload increases, and staff time is the main cost. Clinical teams had not evaluated impact of their intervention, and analysis of routinely collected data did not identify any impact. There are no currently used generic outcome measures but the Patient Activation Measure and the Physician Humanistic Behaviour Questionnaire are promising. Scoping reviews suggest digital clinical communication is acceptable to young people but with no clear evidence of benefit except for mental health.\ud \ud Limitations \ud \ud Qualitative data was mostly from clinician enthusiasts. No interviews were achieved with young people who do not attend clinics. Clinicians struggled to estimate workload. Only eight full sets of routine data were available.\ud \ud Conclusions \ud \ud Timely digital clinical communication is perceived as making a difference to health care and health outcome for young people with long term conditions but this is not supported by evidence that measures health outcome. Such communication is challenging and costly to provide but valued by young people.\ud \ud

Background: Young people (aged 16-24 years) with long-term health conditions can disengage from health services, resulting in poor health outcomes, but clinicians in the UK National Health Service (NHS) are using digital communication to try to improve engagement. Evidence of effectiveness of this digital communication is equivocal. There are gaps in evidence as to how it might work, its cost, and ethical and safety issues.Objective: Our objective was to understand how the use of digital communication between young people with long-term conditions and their NHS specialist clinicians changes engagement of the young people with their health care; and to identify costs and necessary safeguards.Methods: We conducted mixed-methods case studies of 20 NHS specialist clinical teams from across England and Wales and their practice providing care for 13 different long-term physical or mental health conditions. We observed 79 clinical team members and interviewed 165 young people aged 16-24 years with a long-term health condition recruited via case study clinical teams, 173 clinical team members, and 16 information governance specialists from study NHS Trusts. We conducted a thematic analysis of how digital communication works, and analyzed ethics, safety and governance, and annual direct costs.Results: Young people and their clinical teams variously used mobile phone calls, text messages, email, and voice over Internet protocol. Length of clinician use of digital communication varied from 1 to 13 years in 17 case studies, and was being considered in 3. Digital communication enables timely access for young people to the right clinician at the time when it can make a difference to how they manage their health condition. This is valued as an addition to traditional clinic appointments and can engage those otherwise disengaged, particularly at times of change for young people. It can enhance patient autonomy, empowerment and activation. It challenges the nature and boundaries of therapeutic relationships but can improve trust. The clinical teams studied had not themselves formally evaluated the impact of their intervention. Staff time is the main cost driver, but offsetting savings are likely elsewhere in the health service. Risks include increased dependence on clinicians, inadvertent disclosure of confidential information, and communication failures, which are mostly mitigated by young people and clinicians using common-sense approaches.Conclusions: As NHS policy prompts more widespread use of digital communication to improve the health care experience, our findings suggest that benefit is most likely, and harms are mitigated, when digital communication is used with patients who already have a relationship of trust with the clinical team, and where there is identifiable need for patients to have flexible access, such as when transitioning between services, treatments, or lived context. Clinical teams need a proactive approach to ethics, governance, and patient safety.