Web 2.0 and PMRs

Web 2.0 and PMRs

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  PMRs and Web2.0 in the NHS Possibilities and concerns in delivery of care in the UK. Mary Hawking GP Bedfordshire, UKCHIP, member PHCSG
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  Definitions From Wikipedia, the free encyclopedia The term " Web 2.0 " describes the changing trends in the use of World Wide Web technology and web design that aim to enhance creativity , communications, secure information sharing, collaboration and functionality of the web. Web 2.0 concepts have led to the development and evolution of web culture communities and hosted services , such as social-networking sites , video sharing sites , wikis , blogs , and folksonomies . A personal health record or PHR is typically a health record that is initiated and maintained by an individual. An ideal PHR would provide a complete and accurate summary of the health and medical history of an individual by gathering data from many sources and making this information accessible online to anyone who has the necessary electronic credentials to view the information.
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  PMR – whatis it – and what for? PMR “Personal Medical Record” (a) The Personal Healthcare Encounter Record (PHER) – a detailed longitudinal record of the outcomes of encounters with healthcare professionals and healthcare institutions. This will comprise largely clinically coded information (and by coding we mean both technical coding such as SNOMED, READ, ICD and OPCS and the jargon based code of clinical language and terminology including the recorded observations and comments of the clinicians in contact with the patient). (b) The Personal Health Record (PHR) – a record comprising the Personal Healthcare Encounter Record and a much wider range of personal health, social, demographic, financial, economic, family and social-network based data, information and knowledge resources. Mark Outhwaite et al: The web-based personal health record – research implications for patients, consumers, health services and UK industry
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  What makes theUK healthcare system unique? NHS Free at point of delivery Universal coverage Split between GP and hospital care Population registered with GP NHS Records Cradle to grave record Computerised GP records (all GP systems supply same functions) Read Code enabling computer analysis
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  Why keep medicalrecords? Good practice guidelines for general practice electronic patient records - version 3.1 (2005) http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4008657 2. Patient record systems – purposes and characteristics 2.1 Clinical purposes General practices require a patient record system that has the following functionality; • Facilitate the clinical care of individual patients by; - Assisting the clinician to structure his or her thoughts and make appropriate decisions - Acting as an aide memoir for the clinician during subsequent consultations - Making information available to others with access to the same record system who are involved in the care of the same patient - Providing information for inclusion in other documents (e.g. laboratory requests, referrals and medical reports) - Storing information received from other parties or organisations (e.g. laboratory results and letters from specialists) - Transfer the record to any NHS practice with which the patient subsequently registers - Providing information to patients about their health and health care • Assist in the clinical care of the practice population by ; - Assessing the health needs of the practice population - Identifying target groups and enabling call and recall programmes - Monitoring the progress of health promotion initiatives - Providing patients with an opportunity to contribute to their records - Supporting medical audit
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  Why keep medicalrecords? 2.2 Non-clinical purposes Practices also need a patient record system that can be used to meet administrative, legal and contractual obligations 2 by; • Providing medico-legal evidence (e.g. to defend against claims of negligence) • Providing legal evidence in respect of claims by a patient against a third party (e.g. for injuries, occupational diseases and in respect of product liability) • Meeting the requirements of specific legislation on subject access to personal data and medical records • Recording the preferences of patients in respect of access to and disclosure of information they have provided in confidence • Providing evidence of workload within a practice or a PCO • Providing evidence of workload to PCOs (e.g. to support claims and bids for resources) • To enable commissioning of community and secondary healthcare services • Monitoring the use of external resource usage (e.g. prescribing, laboratory requests and referrals) 2.3 Additional purposes Practices are increasingly likely to require a patient record system that can be used ; • To interact with a decision support/expert-system ; • To support teaching and continuing medical education. • To support clinical governance activities • To support professional appraisal and revalidation • To enable ; - Epidemiological monitoring - Surveillance of possible adverse effects of drugs - Clinical research 2 GMC Confidentiality: protecting and providing information, www.gmc-uk.org/standards/
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  What is changing?Technology Cheap and portable hardware GP records are held electronically NPfIT - Care Records (SCR and DCR), ETP, GP2GP, HealthSpace Web 2.0 – social networking, discussion boards Wikis and Google Technology enabling Patient Access http://www.record-access-collaborative.org/index.asp?PID=1 GraphNet ( www.graphnethealth.com ) GPmail ( www.gepmail.co.uk ) Foldercare ( www.foldercare.co.uk ) Renalpatientview ( www.renalpatientview.org ) PAERS/EMIS/InPractice Systems ( www.paers.net ) Health eCard ( http:// www.healthecard.co.uk ) Virtual records e.g. EMIS Web in Liverpool ( Dusting away the cobwebs with EMIS Web - New health service for Liverpool http://www.emisnug.org.uk/conferences/previous-conferences/emis-national-user-group-conference-2008.aspx ) NHS – changes in organisation and delivery of care Dispersed care - Dazai, walk-in centres, polyclinics Care no longer orchestrated by GP Independent Prescribers “ Patient-centric care” and Patient Choice Introduction of commercial providers Legislation Changes to DPA under Coroners and Justice Bill clauses 151-154 These changes enable and require changes in information sharing.
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  What isn’t changing?Use of Records to manage patient care (This requires confidence in the record) Concerns over security and confidentiality These are not the same thing “ Ownership” issues – especially with shared records Data quality Legal liability Patients
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  Where – andhow – might Web 2.0 be useful? Personal Health Plans These are the patient side of Pathways of Care Being piloted May or may not develop into Personal Health Budgets At present, on paper Pathways of Care for LTCs (Long Term Conditions) Structured care plans for LTCs tailored to individual Include social care Care spread over many organisations Need managing by patient with or without guidance/assistance Patient empowerment Communication Between patient and HCPs/care providers (HCP – Health Care Professional) Between different HCPs/care providers
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  Personal Health PlanOutline of my Health Plan 1. ABOUT ME My name Preferred means of contact NHS Number Date of birth Next of kin and closest relative Carers (family / other ) Key professionals contact details Key worker GP Consultant 2. MY PREFRENCES What I like to be called Language Information related to religion/ethnicity/culture What I am like/how I see myself 3. IMPORTANT INFORMATION My long term conditions Allergies Organ donation 4. HOW I AM NOW What is good about my current health & wellbeing Concerns I have about my current health & wellbeing My main health & wellbeing needs Validated quality of life measure for example EQ5D/ SF36 5. MY HEALTH ACTION PLAN What I want to achieve How I plan to help myself The support I need to achieve my goal The actions I have agreed with my key worker My personal support directory Information relevant to my needs My medicines My recent test results My plan for when things get worse Advance planning My preferences and priorities for future care Additional information My Personal Health Budget (optional)
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  Risks Medical records(PEHRs) are used to inform decisions about treatment Need to be reliable i.e. HCP and patient can trust the information or be aware of limitations Data quality when entries by different organisations with different record keeping needs Spurious certainty due to Coding Division of responsibility Independent Prescribers not trained in all areas Lack of co-ordination of treatment Failure to act when needed Confidentiality/security Access by a lot of individuals/organisations Storage of records after ending relationship/multiple copies Unauthorised access and/or retention Server/company failure: malware: loss. Records not available when needed Coercion (e.g. for total access from abusive relationships and employers) Snake oil on the Web Reliability of information on the Web Pressure from commercial organisations or alternative providers/practitioners/groups. http://seattletimes.nwsource.com/news/health/suddenlysick/
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  Current PMR solutionsUS solutions Appear to be for linking provider information, mainly letter, lab and prescribing Include planning/ appointment facilities Include facilities for recording data e.g. blood sugar, blood pressure, weight, exercise. Facilities for prompting users to ask for new treatments Security status not clear apart from reassurances on sites. Passwords. UK site – Healthspace https://www.healthspace.nhs.uk/visitor/default.aspx?ReturnUrl=%2fusers%2fhome.aspx Looks promising Includes calendar, planning, reminder facilities Includes facilities for entering data – but very limited Facilities for recording links No records apart from SCR (when would need enhanced registration) No space visible for PHP or patient notes Security – basic, password – enhanced can be security token. Secondary uses not clear. No facility at present to link to GP record or other DCR Not clear in any system where social networking fits in.
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  Conclusions Before decidingwhether Web 2.0 is useful for PMR, need to know:- Purpose of PMR as opposed to GP/organisational/shared record Whether it is a replacement for GP record or additional Would it supersede Remote Patient Access to GP electronic records? What it could/should contain Obligatory or voluntary Management of access Potential – or mandated - use Who funds it Who “owns” it How access, security and confidentiality are managed Secondary uses Within the NHS By organisations/interests outside the NHS
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  Finally New technologyhas transformed care in General Practice in the UK Devolution, NPfIT, LSPs ensure difference in different areas UK Changes in organisation of NHS (different in England, Scotland, Wales and Northern Ireland mean different requirements from medical records with IT implications Using new technologies very dependant on organisation of healthcare delivery US model may not be relevant in UK or European systems Personal view – lot of potential to enhance existing records and implement PHPs, but needs business case and impact assessment if being adopted into mainstream NHS care provision.