im impli lications ions for I for IT gove overna rnanc nce of - PowerPoint PPT Presentation

HARG RG W Works orkshop hop on on we weara rable ble medic ical d l devic vice data 2018-07-23 The he GLOVE Proje roject: : Re Remote ote data-capture ure in in ha hand nd-care re, t the he im impli lications ions for I for IT gove overna rnanc nce of routi of routine ne-monit onitoring oring wi with h patie ients nts Adults, children, parents affected by EB King’s College London Guy’s and St Thomas NHS Foundation Trust Great Ormond Street Hospital NHS Foundation Trust Cardiff University University of Surrey Longhand Data Limited Skinwear Limited SFM Limited 1

• GLOVE Project Background • Co-design methodology & iterative validation with NHS clinicians, patients, parents • Splint Glove Overview • Hand Therapy-online application Session ssion Plan an • Evaluation of the Hand Therapy-online in routine practice with a view to implementation • NIHR Ready; Steady; Go: Telehealth Implementation Toolkit (http://clahrc-yh.nihr.ac.uk/industry/ready- steady-go-telehealth-implementation-toolkit) 2

• GLOVE is a research project delivering hand therapy devices and telehealth care system wit ith patients, parents, clinicians • GLOVE follows Health Research Authority Research & Information Governance processes IT gov overnance ernance pro rocesse esses • Longhand Data Limited operate under Accredited Information are re embedd bedded ed in the Security Management and Quality Management Systems conduc duct t of f the e GLOVE OVE • GLOVE implementation follows the NIHR Ready; Steady; Go Pro rojec ject telehealth implementation Toolkit

Ba Backg kground round • EB skin blisters and heals with adhesions and scarring Generation eration and eva evaLuation uation Of f • Re-blistering is the norm hand d therapy rapy de deVices ices fo for r • Deformities include finger webbing, contractures, and loss of function Epidermolysis ermolysis – • Current devices that can delay deformities are not tolerated • Surgical interventions are short lived – patients are lost to follow-up (range GLOVE OVE Pro rojec ject 1 month to 6 years) • There is no method of systematically & routinely charting deformities, NIH IHR R II II-OL OL-051 0513-10001 0001 therapies, outcomes or costs

• Participatory approach; values and uses individual experiences to improve medical devices • Design sciences: use of design principles to ‘design - out’ limitations of wound care devices and systems with people with EB and the clinicians Methodolog thodology y - Ex Experi rienc ence e Research user need Ba Based ed Visualise Solutions Prototypes and Refine Co-desi Co esign gn - Bate P, Robert G Experience‐based design: from redesigning the system around the patient to co‐designing services with the patient. Qual Saf Health Care. 2006 October; 15(5): 307 – 310. doi: 10.1136/qshc.2005.016527 - Design for Public Good (2013) www.seeplatform.eu

Cur urrent t fabr abrica cate ted d device ces to d to delay ay defor ormitie ties: s: finger w wrap apping, sca car- management gloves, ‘in - house’ splints 6

The re request uest : : devices ices to manag nage e Dres ressing g glove ve blisters sters and web b spaces aces; ; a Therapy rapy- Adjustab able e Sp Splint Gl Glove: ve: Online ine system stem co co-desi designed gned with th meas easurem remen ent vi via a sen ensors rs & indivi vidual alised ed pneu neumat matic users rs splinting built onto the g e glove, ve, conn nnect ecting it to the H e Han and Th Therap erapy-Onli nline e sys ystem em Sk Skinnies nies WEB TM web eb space acer r glove ve 7

Han and d Therapy rapy-online online Application of Longhand Data Limited Digital Data Capture system: Information Management and Quality Management Systems and Accreditation • Interface with NHS Electronic Patient Record systems for routine charting of hand deformities and clinical outcomes of hand therapy • Remote data input and access to data: clinicians, patients, parents • TELER TM patient-recorded outcome measures of observable changes in hand/skin condition; hand function; experiences of hand devices • Hand measurements recorded by clinicians (face-to-face); digital measurements via the splint glove 8

• The splint glove and the Hand Therapy-online system enable: • Evidence informed remote measurement, treatment and management of hand deformities arising from EB Co Concl clusions usions • Remote and face-to-face routine measurement and charting of hand skin condition, hand function, responses to treatment, experiences of individuals with EB • The GLOVE Project and current implementation are underpinned by co-design, research and information governance methodology and processes