3. The Patients Association
Listening to Patients and Speaking up for Change
• An independent National Charity for over 50 years
• Helpline assists with over 7000 enquiries a year through
telephone, web and email
• Support patients and their families through unique casework
• Investigate health and care concerns that patients raise with us
• Monitor trends in patient satisfaction and NHS targets
• Publish Patient Stories
• Promote good practice amongst healthcare professionals
• Developed complaints handling Standards and a Charter
• Identified deficiencies in Care Homes – Our charter forms part
of the CQC inspection process for care homes
• Launched and lead two UK parliamentary committees (PPI
and Patient Safety)
• Undertake our own research.
4. The Issues
• Low levels of public awareness about the way data is and
can be used
• Concerns about confidentiality and cyber security
• Health data comes in many forms:
• Formal, collected by healthcare providers, such as GPs,
Hospitals, Social Care services, Private providers
• Informal, e.g. Fitness bands, Health trackers of various kinds
(wearables)
• Data sharing arrangements are complex and patchy
• It’s a complex issue: Data needs to be shared in
delivering care (Direct Care) and in managing healthcare
delivery, for preventative medicine and in medical
research (Indirect Care)
5. Our Position
• The PA supports data sharing under sensible rigorous controls
• The consent model should default to opt-in (so as to ensure
data sets used in Indirect Care are as complete as possible)
• Benefits of inclusion need to be clearly explained/with simple opt-
out
• Needs clear description of the data to be shared, with whom and
why
• Accessibility: some patient groups require specific support and
consideration. E.g. those with learning disability or mental
health needs
• Assurance of security: In view of increasing cyber-security
threats, best practice guarantees may need to be strengthened,
so as to be kept up to date and deal with new risks as they are
identified
• The European General Data Protection Regulations 2018 ….
give citizens control over use of their personal data
6. Patient’s Views
• Formal Data1
• Most patients support (and expect) data sharing for their Direct
Care
• And for Indirect Care as this will lead to better care in the
future
• But Not for other purposes including the use of data by private
companies for marketing purposes
• Informal Data
• 74% of 1000 UK adults surveyed would be happy to share data
from a wearable with their GP2
• 63% of 2000 US millennials would be interested in providing
their health data from wearables to their doctors3
1 PA Survey with APPG for PPI in Health and Social Care (in
response to concerns raised by Care.data programme)
2KPMG, Sept 2015
3Harris Poll for Salesforce, 2015 (surveyed 2,095 Adults)
8. Public confidence – what can go wrong?
• Feb 2014: Care.data delayed by 6 months
• Guardian Feb 2014: Health and Social Care Information Centre
admitted giving the insurance industry the pseudonymised hospital
records of millions of patients
• Guardian Mar 2014: Tory MP says “The entire NHS hospital patient
database for England was handed over to management consultants
who uploaded it to Google servers based outside the UK”
• June 2014: Care.data Inquiry explored:
• The lack of publicity, clarity and patient involvement in the Care.data
programme.
• The issues surrounding opting in/opting out of the scheme.
• The impact on patient care as a result of sharing information for research
purposes.
• Who should medical information be shared with and why
• Jan 2017: NHS hands over patient records to Home Office for
immigration crackdown
APPG for Patient and Public Involvement in Health and Social Care “Care.data Inquiry”
Patients Association Website
9. App Development – what can go wrong?
• Study of all apps certified to be clinically safe and trustworthy
by the UK NHS Health Apps Library (as of July 2013)
• 89 % (of 79) apps transmitted information to online services
• Only 67% had a privacy policy (a legal requirement)
• 62% transmitted user-related information over the internet
• 78 % of these with a policy did not describe the nature of personal
information included in transmissions
• 44% (of 69) apps sent identifying information over the internet
• 66% of these did not use encryption
• 20% of these did not have a privacy policy
• 4 apps sent both identifying and health information without
encryption
Source: Unaddressed privacy risks in accredited health and wellness apps: a cross-
sectional systematic assessment
Huckvale et al, BMC Medicine 2015, 13:214
12. For Patients
• Manage your healthcare
from the comfort of your
own home
• Reduce time spent attending
routine medical
appointments
• Give all the professionals
involved in your care a
better, more rounded view of
your medical history
For Clinicians
• Helps patients become more
involved in managing their
own health
• Reduces time devoted to
routine appointments
• Real time access to
pathology and radiology
results and appointments and
attendances, for example,
at other acute Trusts
For Patients in NW London …….
Population Health
Integrated Care
Patient Engagement
Data Sharing
Digital Records
14. Summary
• Low levels of public awareness about the way data is and
can be used
• Public concerns about confidentiality and cyber security
• Data sharing arrangements are complex and patchy
• But the future is bright …….
• Patients and the PA support and expect data sharing under
sensible rigorous controls
• The consent model should default to opt-in
• Accessibility and Security Assurances needed
• Above all clarity and transparency – who is data shared
with, what data is shared, why? – and in future what AI
decisions were made, when and why?
