What patients want from their data

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What patients want from their data

• MARLENE WINFIELD
• NHS INFORMATION AUTHORITY
• marlene.winfield_at_nhsia.nhs.uk

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About the NHSIA

• Making latest knowledge available eg. National
  electronic Library for Health, information
  strategies
• Analytical tools, eg. for audit and comparing
  performance
• Tracing services

• Created in 1999
• Piloting electronic health record
• Connecting GPs, hospitals, pharmacies, path labs,
  and the public
• Data security, quality and coding

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How often are patients asked what they want from
information services?Or do we just assume we
know?
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Hadfield pilot of access to EHR found patients
wanted

• a shared EHR with less repetition
• access to their record in the surgery, home,
  abroad
• touch screens
• to use their record to check historical data,
  compare past illnesses and present symptoms
• to be able to analyse readings, eg blood pressure
• UMIST research, April 2001, based on interviews,
  diaries, focus groups with 41 people with EHRs

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KPMG asked what patients really think of the NHS

• 41 want pre-booked outpatient appointments
• 49 want pre-appointment reminders
• 59 are prepared to travel for care
• NHS should pilot a customer management system to
  integrate support and information and to allow
  patients to look up their own details
• MORI of 2012 adults, Feb 2002

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NHSIA patient journey research

• Very little is understood about the patient
  journey as described by the patient and
  information needs at each decision point
• It would be good to have information at the
  outset and at regular intervals that reinforce
  that you can lead a normal life. Most of the
  worry was caused by the unknown at the beginning.
• Diabetes patient
• Scoping research by IT Perspectives, March 2002

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What expectations are driving change?
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The government has promised patients that
information services will

• ensure safe, high quality care (Learning from
  Bristol)
• enable self-care (Expert Patient Programme)
• bring care to them

• keep track of them Boots can track me, why not
  the NHS?
• give them greater choice of doctors, hospitals,
  treatments (NHS Direct/NHS.UK)

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And while using their data to do all that, the
NHS must protect patient confidentiality.
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Post NHS Plan and Bristol Inquiry, patients and
public are increasing involvement through

• more decision-making generally
• planning their own care packages
• training health care providers
• patients as teachers
• www.dipex.org

• quality control
• satisfaction surveys
• exercising choice
• planning and managing health services
• statutory public involvement structures

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Scenario WesleyWesley (27) has hurt his back
at work and is in pain. He knows from life
skills classes at school how to access the NHS
Direct website that gives evidence-based
recommendations for managing back pain. He uses
a flow diagram to check whether he needs to see a
doctor. He decides he can manage his symptoms by
keeping moving and taking the suggested pain
relieving medicines he can buy from the chemist.
He accesses a local back management group as he
has had the problem before. He joins by
computer. Three days later he is able to return
to work and the following week he attends the
groups first meeting.(with thanks to Dr.
Cecilia Pyper)
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Better use of patient data will make the NHS more
patient-centred
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As defined by patient groups...

• Change supported from the top
• Asking users what is important to them and giving
  them time to think and answer
• Letting users help design services

• Letting users help define success and train staff
  
• Using feedback to improve services and
  continually monitoring impacts/ needs/gaps
• Learning from others (sectors, countries)

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Scenario LukeLuke (54) is determined to
remain young and fit for as long as possible. He
regularly consults his own secure NHS Direct
health webspace that holds his health records.
He has registered a profile of interests,
including a family history of diabetes, and so
he regularly receives updated information about
diet, exercise and early warning signs. He keeps
a regular check on his blood pressure, eyesight,
blood sugar levels, heart rate during exercise,
and weight, which he enters on the site. He
automatically receives personalised advice about
changes to his diet or exercise regime or is
alerted if he needs to see his GP.
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What technology and people developments drive the
change?
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Technology

• Shared electronic health record and personal
  webspace
• 24 hour access to knowledge for patient and
  professional
• National Knowledge Service
• including at bedside
• Expert systems to devolve care downwards

• Telemedicine/new ways of working
• Interactive self-help training and condition
  management programmes
• Sophisticated audit tools that capture patient
  data once for many uses

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People

• Partnership working with good information sharing
• patient/health carer
• primary/secondary care
• health and social care
• mainstream/alternative
• public/private/voluntary
  sectors

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Scenario EldornaEldorna (70) has a fall.
An ambulance crew uses a protocol of tests that
show a minor infection could be making her
unsteady. They rule out broken bones and check
her electronic health record. She doesnt want
to go to hospital. They consult a doctor in the
AE via telelink. She agrees the diagnosis and
emails a prescription that the local pharmacist
delivers with clear instructions. By computer,
the crew arrange for a district nurse to call.
Meanwhile, a social worker will keep a check by
videolink. Both will have access to parts of
Eldornas electronic health record. The crew book
her a GP appointment and programme a prompt to
alert the GP if she doesnt appear.
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Information systems will help meet special
information needs

• a quarter have them
• language
• literacy
• physical disability
• learning difficulty

• technophobia
• lack of access to technology
• geographic isolation
• cultural

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Scenario Dahabo Dahabo (28),originally from
Somalia, is using a contraceptive pill. The
pharmacist checks Dahabos health disk and online
knowledge systems for contraindications at each
refill. He checks the disk to ensure she is
routinely checking her blood pressure. A blood
pressure machine at the pharmacy records readings
onto Dahabos disk and sends them automatically
to her GP. If results are abnormal, Dahabo, the
GP and pharmacist will get alerts. Dahabos disk
gives her information about her type of pill and
links to an online information service. All the
information is automatically translated into the
language of her choice. A multi-lingual helpline
is available at certain times as well. (with
thanks to Dr. Cecilia Pyper)
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Do people worry about their data being used?
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Who can see your medical information? (October
2001)
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How do people want their data used?

• most people were happy to share data for most
  uses (except teaching students)
• who wanted the data mattered more than the type
  of data or the use
• people want to be asked for consent but if this
  is not possible or too costly, they will trust
  the NHS
• Sheffield University, based on 4000 people
  considering vignettes, 2001

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What should the NHS do to keep the publics trust?
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E-systems can enable informed sharing

• monitor who sees their information
• allow them to add and correct data
• make guidance and training available online to
  staff
• anonymise data

• show people what information is held on them
• inform them how their information will be used
  and the benefits/risks
• control access according to their wishes, though
  choice may be limited

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WERE ALL IN THIS TOGETHERWe need to enter into
a new relationship with the public, where we
develop information services with them, not do it
to them.
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THANK YOU