Patient empowerment, the key to quality improvement

1
Patient empowerment, the key to quality
improvement

• Dr David Somekh
• President, European Society for Quality in
  Healthcare (ESQH)

2
EU Health Policy 2010A helicopter view

eHealth
Common Vocabulary Consensus On Quality Tools
Patient Safety
Patient as partner
Education for Quality e.g. communication skills
3
Patient safety as an exampleThe WHO World
Alliance for Patient Safety

• Six programmes 2004-6
• Global patient safety challenge
• Patients for patient safety
• Taxonomy for patient safety
• Research for patient safety
• Solutions for patient safety
• Reporting and Learning

4
WHO programme patient and consumer involvement

• Leapfrog partnership (coalition of healthcare
• purchasers and JCAHO, supported by
  Medicare Medicaid)
• Speak Up campaign

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Speak Up campaign

• Speak up if you have questions or concerns
• Pay attention to the care you are receiving
• Educate yourself about your condition
• Ask a trusted friend to be your advocate
• Know your medications (what and why)
• Use a health provider that measures safety
• Participate in all decisions about your care

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Sounds good?

• let us deconstruct this

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• If not simply a well-thought out but ineffectual
  wish-list, who drives this? one or more of,
  government, professional, patient, citizen?
• The strategy defines the what, not the how
• Do we know what works and what doesnt?
• Do we have an evidence-base?
• What does history tell us?

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• Patient empowerment has been and still is central
  to most HC Quality strategies.
• By and large, is there evidence of substantial
  progress in this area? NO
• Is patient empowerment specifically mentioned in
  the EC public health strategy 2003-8 from DGSANCO
  (cf. patient safety, measurement tools etc)?
  NO
• Is there information available regarding current
  and past activity in this area across Europe?
  NO

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What kind of evidence do we have?

• In other areas of quality the initiatives follow
  a similar pattern -
• Map current activity what is happening?
• - make this a living database to
  continue to update
• 2. Get a consensus on terms and vocabulary
• 3. Establish a tool-box of validated methods
  for measurement (using the best advice available,
  from experts)
• - define the role of guidelines
  and indicators

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• 4. Develop a small set of strategic approaches,
  to help late starters and those early in their
  journey not to have to re-invent the wheel
• 5. Spend a lot of time and effort disseminating
  the results of activities 1-4, ensuring that
  there are versions of the information translated
  to the needs of the different stakeholders
  (politicians, policy makers, health providers
  e.g. managers, insurers, professionals, patients
  and citizens)

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• This hasnt yet been undertaken for patient
  empowerment.
• A multi-national project, acronym EMPowER has
  been designed, but so far has not attracted EU
  financial support, although further bids will be
  made to DG Research and to DGSANCO soon
• However, activity within this field in the UK has
  been well charted over the last few years -

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• Increased responsiveness to patients has been a
  goal for UK health policy for several decades
• Consumerism was promoted in the 90s as part of
  a strategy to drive up quality standards and VFM
• The rhetoric of patient power is still a feature
  of government statements, but the emphasis has
  subtly shifted (A.Coulter 2003)
• The patient is no longer primarily a consumer but
  increasingly a partner

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• Patient empowerment (and the responsibilities
  that it brings) has become a key element in the
  strategy for managing demand
• Since the Bristol enquiry (and Shipman) the
  Government has made patient-centredness central
  to subsequent policy statements (e.g. the NHS
  plan, July 2000)

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• But hold on a minute! If you refer back to slide
  2, our overview of HC quality strategy, the
  patient is central to that diagram too!
• That means that the politicians and ourselves
  seem to be pointing in the same direction whats
  happening?
• The paths that we took to get here may have been
  different, the question is, what lessons have
  been learnt that provide us (and them) with the
  information needed to make real progress?

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• There is a growing body of evidence to
  demonstrate that patient engagement in treatment
  decisions and in managing their own healthcare
  leads to greater appropriateness and better
  outcomes
• Four key strategy areas
• information (e.g. NHS Direct, NSFs)
• feedback (e.g. PALS, patient survey)
• choice (e.g. deals if W/L exceeds deadline)
• influence (e.g. patient forum)

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• Coulter (2003) the strategy is commendable and
  some good progress has been made but
• a critical stocktaking of activities to date
  reveals a collection of disconnected activities
  rather than a coherent, joined-up strategy.
  Therefore what is needed is
• more co-ordination
• more attention to the evidence base underpinning
  initiatives
• a specific strategy for public and patient
  information
• communication skills training for all clinicians

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2005 update (A) Harry Cayton Director for
patients and the public (Paris lecture, April)

• The Wanless report Securing our Future Health
  (2002) identified a massive growth of health
  costs in the future unless demand was reduced and
  supply improved. Health services must be more
  productive and people more engaged in their own
  healthcare.
• Health literacy the ability to understand our
  own health (i.e. knowledge) and to act
  appropriately (management skills for own health
  or illness) inevitably linked to literacy
  itself and other indicators of health inequality

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• Health literacy is not directly linked to
  knowledge. If it were, health education would be
  enough to transform behaviour it isnt.
• People need to be persuaded by government
  (through information, regulation and incentives)
  to make healthy choices.

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• Information partnerships e.g. ask about
  medicines
• Self-care e.g. the Expert Patient Programme
• Feed-back need better survey and other data
• Influence more effective engagement
• BUT structural arrangements are only part of the
  picture.
• Cultural change is at the heart of creating a
  fully engaged health community
• And it isnt easy

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• Fully engaged patients need responsive, fully
  engaged partners. This means a shift in attitude
  and practice and skills for healthcare and public
  health professionals a shift perhaps away from
  knowledge to communication, from decision making
  to supporting choice.
• For patients choice means greater personal
  responsibility, a requirement to become active
  rather than passive in pursuit of personal
  well-being and quality of life (Cayton 2005)

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2005 Update (B) Angela Coulter CEO Picker
Institute (RSM lecture October)

• The active patient co-producer of health,
• autonomous partner in treating, managing and
• preventing disease
• well informed has referral
  choices
• discerning treatment
  choices facil-
• manages own health
  itated
• accesses improved manages own care
• consultation as needed active citizen

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• If this is our concept of the future patient,
  what steps do we now take to make progress?
• Increase patient engagement by-
• building health literacy
• supporting self care and self-management
• offering a choice of providers
• sharing treatment decisions

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Health literacy what works?

• Printed materials professional advice can
  improve knowledge and recall
• Personalised information and education works best
• Internet programmes can be effective
• Targeted mass media campaigns can affect health
  behaviours and use of health services
• Limited evidence of impact on health inequalities

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Health literacy evidence base from 14 systematic
reviews

• health knowledge improved
• patients experience improvements in
  satisfaction and self-efficacy
• utilisation and cost some positive effects
• health status - unknown

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Strategies to improve self-care

• self-help guides
• self-monitoring at home
• self-medication (move to OTC)
• patient-held records
• telephone support (telecare)
• lay-led self-management education (e.g. EPP)
• Support for self care/management from health
• professionals integrated into HC process

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Education for self-care evidence base from 49
systematic reviews

• health knowledge improved
• patients experience positive short-term
  effects
• utilisation and cost some positive short-term
  effects
• health status limited short-term effects

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Choosing providers implementation issues

• patients want choice but lack reliable
  information for informed choices
• non-clinical staff have an important role to play
• information on quality and safety as important as
  information about practical arrangements
• publishing performance data can stimulate quality
  improvement efforts
• need for careful monitoring equity, quality,
  patients rights

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Choosing providers the evidence base (no
systematic reviews)

• health knowledge not known, but public
  reporting can stimulate QI
• patients experience positive
• utilisation and cost mixed evidence on uptake
  rates
• health status - unknown

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Shared decision-making implementation issues

• shared decision-making and informed choice is
  feasible and probably cost-effective
• patients need time to consider preferences good
  quality information and decision aids
• clinicians need training in handling uncertainty,
  communicating risk and sharing decisions

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Shared decision-making evidence base from 17
systematic reviews

• health knowledge improved
• patients experience improved
• utilisation and cost mainly positive effects
• health status no effect

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Summary of Picker Institute evidence on effects
of patient empowerment/engagement

• health knowledge definitely improved
• patients experience generally improved
• utilisation and cost some limited positive
  effects
• health status few effects, largely unknown

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EU Health Policy 2010A helicopter view

eHealth
Common Vocabulary Consensus On Quality Tools
Patient Safety
Patient as partner
Education for Quality e.g. communication skills
33
Patient empowerment/engagement conclusions

• If health systems are to remain viable, patient
  engagement needs to get greater policy priority
• It is clear how this quality area is an essential
  part of more or less all other key quality areas
• It is an area often paid lip service to, and the
  evidence base, when investigated, is patchy
• Implementation is difficult because it requires
  major cultural change within healthcare
• The responsibility to drive this process has not
  been taken, due to cost/benefit uncertainty

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• Contact ESQH on www.esqh.net

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References

• Engaging patients and citizens. A.Coulter (2003)
  chap.12 in The quest for quality in the NHS a
  mid-term evaluation of a ten year quality
  agenda. Pp.183-202. The Nuffield Trust London,
  TSO.
• World alliance for patient safety forward
  programme (2004). (pdf) WHO (available on-line)
• The flat-pack patient? Co-creating health and
  health services. H.Cayton (2005) (paper given at
  World health Congress. Paris, April 2005)
• Involved, consenting or empowered? A.Coulter
  (2005) RSM lecture. London, October 2005