The Cit itiz izen Perspective for Dig igit ital l Healt lth Julia Manning BSc(Hons) MCOptom FRSA Chief Executive, 2020health
About 2020health • Mission 2020health is an independent, social enterprise think tank whose mission is to “Make Health Personal”. Through research, evaluation, campaigning and relationships we aim to both improve individual health and create the conditions for a healthy society. • Vision Making Health Personal means: Sustainability – individuals and their communities are essential foundations of and participants in maintaining affordable healthcare. Sharing – empowering people through technology to build confidence and knowledge, and participate in managing their health and networking within communities. Shaping – designing healthcare that reflects the needs of the individual and enables them to function within their environment.
2020health’s track record ...
Our health records…
Problems for clinical judgement: 2. Obtaining a reliable past medical history Neglecting the past medical history can cause a physician inadvertently to discontinue important medications, prescribe an incorrect dose of chronic medications, duplicate a low-yield diagnostic test, neglect an earlier directive or disrupt plans made by previous clinicians. 1 Problems may become further compounded given that some of the hardest patients to treat are also those with the most complex past medical histories. This article reviews classic observations from psychology that are relevant when taking a past medical history. The patient case in the introduction describes a situation that contains each of the 8 specific traps: telescoping effects, sequencing effects, false memories, inhibition of memory, halo effects, persistence of beliefs, self-presentation and context dependency. Such biases may explain why one of us (D.A.R.) missed the correct diagnosis for this patient who eventually was admitted to hospital because of domestic violence. More generally, problems related to a patient's failure of comprehension, recall, evaluation and expression cause mistakes when a physician is taking a past medical history. Problems for clinical judgement: 2. Obtaining a reliable past medical history Donald A. Redelmeier, Jack V. Tu, Michael J. Schull, Lorraine E. Ferris, Janet E. Hux CMAJ. 2001 March 20; 164(6): 809 – 813.
Brief history of political promises • In 1995/6 a new NHS number was issued to all patients on GPs' lists. These numbers were the basis or electronic patient medical records. By 2001 it provided on-line access to over 60 million records. • electronic patient records in all Primary Care Trusts by 2008 (NHS Plan 2000) • Wanless Report in April 2002 which criticised NHS IT as piecemeal and poorly integrated. In July 2002 Delivering 21st century IT support for the NHS promised: NHS Care Records Service (NHS CRS) containing basic patient information and health details so people would be able to access their record and all their health information and be involved in making decisions about their own care and treatment. • Patients have the right to ask their GP to correct any factual errors they see in their medical records, according to the new NHS Constitution. (2013) • £1 billion to help A&Es and NHS staff access medical records in hi-tech hospital revolution - This new funding will help deliver the government’s commitment to allow everyone to book GP appointments and order repeat prescriptions online by March 2015, as well as give everyone who wants it online access to their GP record.(2013)
The digitally enabled patient
Why it’s so important… Table 1. Projection of partial sight and blindness (<6/12) by disease type, UK (people), 2010 to 2030 (Source: Access Economics 2009: 45-47) Total cases Age Related Cataract Diabetic Glaucoma Refractive Other Macular Retinopathy Error Degeneration 2010 16.8% 13.7% 3.4% 5.3% 53.3% 7.4% n = 1,857,062 312,789 254,417 63,140 98,424 989,814 137,422 2020 17.9% 14.0% 3.2% 5.2% 52.2% 7.4% n = 2,262,124 404,920 316,697 72,388 117,630 1,180,828 167,397 2030 19.6% 14.5% 2.8% 5.2% 50.4% 7.4% n = 2,875,392 563,576 416,931 80,511 149,520 1,449,197 212,779 20-year 55% 80% 64% 28% 52% 46% 55% % increase of cases
Chil ildren and young people le: th the case for PHR • The current estimate of prevalence of Type 1 diabetes in children and young people under the age of 19 in the UK is one per 430 – 530 • 6 – 8 % of children have a proven food allergy • By 2025, asthma will represent the most prevalent chronic childhood disease and result in one of the highest causes of health care costs • 50% of mental illness first occurs before the age of 14 and one in ten children are affected • 7 young people are diagnosed with cancer every day in the UK ….children and parents flying blind Refs https://www.teenagecancertrust.org/?gclid=CMbC3Lyn7swCFTUz0wode8YNpQ https://www.diabetes.org.uk/Documents/About%20Us/Statistics/Diabetes-key-stats-guidelines-April2014.pdf https://www.allergyuk.org/allergy-statistics/allergy-statistics
Wider society - behaviour change… A. Devices and diagnostics – public access to information outside NHS setting B. Keeping up with information – only the public can? And the public most motivated to ‘care’? JAMA McManus 2014* C. Personal investment – individual to NHS spend on digital is 10:1 - Should be no more them and us with this investment leveraged A. Regulation lag – e.g. online refraction USA June 2015 (18-40yrs) * Self-monitoring of blood pressure with self-titration of anti-hypertensives (self-management) results in lower blood pressure in patients with hypertension 12
Technology driven behaviour change Communication and education Prevention and early intervention Treatment and correction Independence and self-care Interdependence and partnership working Recreation and lifestyle Ophthalmology advances
Follow the trends... • a third of people aged over 55 use diagnostic technologies (blood pressure monitors, blood sugar level monitors and mole checkers) compared with just an average of only 12 per cent for younger people (aged 35-44) • nearly 1 in 4 (23 per cent) over-55s would be willing to have a microchip placed under their skin containing medical information that could be accessed by healthcare professionals if they needed medical care, compared with 1 in 5 of younger people (20%) • a quarter (25 per cent) of 18-24 year olds already own and use fitness related smartphone apps – up from 16 per cent of the same age group saying that they owned and used such apps in the 2014 State of the Nation Report • the percentage of 18-24 year olds keeping personal electronic health records, such as diet and fitness notes, rose from 6 per cent in 2014’s State of the Nation Report to 10 per cent in this year’s survey. AXA PPP – 2020health – Design Museum Health Tech & You ‘State of the Nation’ Survey. YouGov October 2015 16
What has to change…. • Professional attitudes – welcome PGD, accelerate sharing of data, public awareness of better practice • Professional promotion – how many GPs have promoted benefits of PHR? • NHS endorsement – national campaign (admitting the disconnect…) • Culture of partnership – participatients – professionals taught from day one / professional expectations • Wider culture – Making Health Personal: information, understanding and confidence • Children Taught in school to request access, be given information and on wellbeing Harness the easier wins e.g. Mindtech / Gamification of healthy behaviours
Thank you www.2020health.org Juliamanning@2020health.org 077 2020 6910
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