Timely Digital Patient-Clinician Communication in Specialist Clinical Services for Young People: A Mixed-Methods Study (The LYNC Study)

• Published in: Journal of medical Internet research 2017-04, Vol.19 (4), p.e102-e102
• Main Authors: Griffiths, Frances, Bryce, Carol, Cave, Jonathan, Dritsaki, Melina, Fraser, Joseph, Hamilton, Kathryn, Huxley, Caroline, Ignatowicz, Agnieszka, Kim, Sung Wook, Kimani, Peter K, Madan, Jason, Slowther, Anne-Marie, Sujan, Mark, Sturt, Jackie
• Format: Article
• Language: English
• Subjects: Access; Adolescent; Adult; Autonomy; Case studies; Change agents; Chronic illnesses; Clinical governance; Clinical medicine; Clinical outcomes; Communication; Communication channels; Confidentiality; Data collection; Delivery of Health Care; Email; Empowerment; Ethics; Health care expenditures; Health education; Health information; Health Services; Health status; Humans; Internet; Interviews; Mental health; Mixed methods research; Original Paper; Patient safety; Questionnaires; Specialists; Teams; Telemedicine; Young Adult; Youth
• ISSN: 1438-8871; 1439-4456; 1438-8871
• DOI: 10.2196/jmir.7154

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. 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. 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. 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. As NHS policy prompts more widespread use of digital communication t