title: Timely Digital Patient-Clinician Communication in Specialist Clinical Services for Young People: A Mixed-Methods Study (The LYNC Study).
abstract: 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 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.
authors.affiliation: Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, United Kingdom.|Centre for Health Policy, School of Public Health, University of the Witwatersrand, Johannesburg, South Africa.
authors.forename: Frances
authors.identifier: 0000-0002-4173-1438
authors.initials: F
authors.lastname: Griffiths
authors.affiliation: Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, United Kingdom.
authors.forename: Carol
authors.identifier: 0000-0003-1484-9032
authors.initials: C
authors.lastname: Bryce
authors.affiliation: Department of Economics, University of Warwick, Coventry, United Kingdom.
authors.forename: Jonathan
authors.identifier: 0000-0002-9879-6507
authors.initials: J
authors.lastname: Cave
authors.affiliation: Oxford Clinical Trials Research Unit, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, United Kingdom.
authors.forename: Melina
authors.identifier: 0000-0002-1673-3036
authors.initials: M
authors.lastname: Dritsaki
authors.affiliation: Patient and Public Involvement, Coventry, United Kingdom.
authors.forename: Joseph
authors.identifier: 0000-0003-0899-9296
authors.initials: J
authors.lastname: Fraser
authors.affiliation: Florence Nightingale Faculty of Nursing and Midwidery, King's College London, London, United Kingdom.
authors.forename: Kathryn
authors.identifier: 0000-0002-2147-4702
authors.initials: K
authors.lastname: Hamilton
authors.affiliation: Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, United Kingdom.
authors.forename: Caroline
authors.identifier: 0000-0001-9755-6096
authors.initials: C
authors.lastname: Huxley
authors.affiliation: Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, United Kingdom.
authors.forename: Agnieszka
authors.identifier: 0000-0002-5863-0828
authors.initials: A
authors.lastname: Ignatowicz
authors.affiliation: Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, United Kingdom.
authors.forename: Sung Wook
authors.identifier: 0000-0002-1254-5038
authors.initials: SW
authors.lastname: Kim
authors.affiliation: Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, United Kingdom.
authors.forename: Peter K
authors.identifier: 0000-0001-8200-3173
authors.initials: PK
authors.lastname: Kimani
authors.affiliation: Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, United Kingdom.
authors.forename: Jason
authors.identifier: 0000-0003-4316-1480
authors.initials: J
authors.lastname: Madan
authors.affiliation: Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, United Kingdom.
authors.forename: Anne-Marie
authors.identifier: 0000-0002-3338-8457
authors.initials: AM
authors.lastname: Slowther
authors.affiliation: Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, United Kingdom.
authors.forename: Mark
authors.identifier: 0000-0001-6895-946X
authors.initials: M
authors.lastname: Sujan
authors.affiliation: Florence Nightingale Faculty of Nursing and Midwidery, King's College London, London, United Kingdom.
authors.forename: Jackie
authors.identifier: 0000-0003-1281-1401
authors.initials: J
authors.lastname: Sturt
mesh_terms: D000293:Adolescent; D000328:Adult; D003142:Communication; D003695:Delivery of Health Care; D006296:Health Services; D006801:Humans; D020407:Internet; D017216:Telemedicine; D055815:Young Adult
keywords: NHS; National Health Service; digital communication; digital health care; long-term conditions; patient communication; young people