Transcript Patients and their physicians: advocacy and new technologies

Patients and their physicians:
advocacy and new technologies
Charlie Tomson
Consultant Nephrologist, Bristol
Past-President, Renal Association
Wessex Physicians Club 13 November 2012, 11.35-12.30
Conflicts of interest: none
Outline
• Jargon: empowerment, activation, shared
decision-making
• Why are policy-makers so interested?
• Why should physicians be interested?
• Measurement
• Patient decision aids
• Renal Patient View
Hands up, anyone who has been
on the receiving end of healthcare
Terminology
•
•
•
•
•
Empowerment
Engagement
Activation
Shared decision-making
Patient decision aids
Shared decision-making
• A process in which clinicians and patients work
together to select tests, treatments,
management or support packages, based on
clinical evidence and the patient’s informed
preferences. It involves the provision of
evidence-based information about options,
outcomes and uncertainties, together with
decision support counselling and a system for
recording and implementing patient’s informed
preferences
Coulter and Collins. Kings Fund 2011.
Patient decision aids
• Decision support aids can be simple, in the form of a
treatment option table, or more complex in the form of
interactive questionnaire/tool, which are increasingly
available online. Both interventions seek to offer patients
an understanding of the range of options available to
them and the implications of those options These tools
are designed to be used as the basis of support for that
individual to make a decision. A decision aid can be
used both as part of the patient consultation and by the
individual before or after a consultation. A recent
Cochrane review on the use of decision aids amongst
people facing treatment or screening decisions that are
consistent with the patient’s values and improve
communication between the clinician and the patient,
allowing greater participation in decision making
http://summaries.cochrane.org/CD001431/decision-aids-to-help-people-facinghealth-or-screening-decisions
Figure 1 The Chronic Care Model (CCM).
Epping-Jordan, J E et al. Qual Saf Health Care 2004;13:299-305
Copyright ©2004 BMJ Publishing Group Ltd.
Outline
• Jargon: empowerment, activation, shared
decision-making
• Why are policy-makers so interested?
• Why should physicians be interested?
• Measurement
• Patient decision aids
• Renal Patient View
Wanless. Securing Our Future Health: Taking a long-term view. 2002.
Patients want reliable information
Is the NHS becoming
more patient-centred?
Trends from the
national surveys of
NHS patients in
England 2002-2007
Picker Institute, 9/07
Decision Aids reduce rates of
discretionary surgery
RR=0.76 (0.6, 0.9)
O’Connor et al., Cochrane
Library, 2009
So that’s where the Coalition got their catchphrase
from!
N Engl J Med 2012: 366: 780-781
• Ethical imperative: ensure that patients receive
‘the care they need and no less, the care they
want and no more’
• Overlap with self-management support and
personalised care planning
• Appropriate for decisions about tests,
procedures, self-management or psychological
intervention, drug treatment, lifestyle change
• Embedding SDM into routine care will require
PDAs; identification of ‘decision points’;
provision, recording, and support for SDM by
providers; training; incentivisation; inclusion in
contracts
Kings Fund 2011. www.kingsfund.org.uk
• Misdiagnosis of patient’s preferences is
commonplace
• Better diagnosis will ensure that
– Patients get the treatment they would choose
if they were well informed
– The NHS aspiration to create an ‘internal
market’ will be realised
– The NHS will save billions – because patients
choose fewer (and less invasive) treatments
when fully informed
Kings Fund 2012. www.kingsfund.org.uk
NHS Constitution
• You have the right
– to be given information about your proposed
treatment in advance, including any significant
risks, any alternative treatments which may
be involved, and the risks involved in doing
nothing
– to access your own health records. These will
always be used to manage your treatment in
your best interests
– to be involved in discussions and decisions
about your healthcare, and to be given
information to enable you to do this
Outline
• Jargon: empowerment, activation, shared
decision-making
• Why are policy-makers so interested?
• Why should physicians be interested?
• Measurement
• Patient decision aids
• Renal Patient View
Confusing dedication to patient
care with patient-centred care
Allan R. Clinical Medicine 2011; 11: 107-108
GRADE: Strength of
recommendation
Level
1
“We
recommend”
2
“We suggest”
Patients
Implications
Clinicians
Most people in your
Most patients should
situation would want the receive the recommended
recommended course of course of action
action and only a small
proportion would not
Policy
The recommendation
can be evaluated as a
candidate for
developing a policy or
a performance
measure
The majority of people in Different choices will be
There is a need for
your situation would want appropriate for different
substantial debate and
the recommended
patients. Each patient
involvement of
course of action, but
needs help to arrive at a stakeholders
many would not
management decision
consistent with her or his
values and preferences
• Preferences: desirability of a healthcare
outcome
– Patient with mild BP+ may prefer to avoid drug
treatment despite not reaching guideline ‘target’
– Surgeon with lone AF may choose to have warfarin –
minor CVA would be career-ending
– PSA screening may prolong life but reduces qualityadjusted life expectancy
• Preferences relatively ignored in EBM until
recently
J Am Med Assoc 2008;300: 436-438
Outline
• Jargon: empowerment, activation, shared
decision-making
• Why are policy-makers so interested?
• Why should physicians be interested?
• Measurement
• Patient decision aids
• Renal Patient View
Patient activation measure
• 22- and 13-item questionnaires, asking about
beliefs, knowledge, and confidence relating to
health/healthcare
• Can be used at the individual patient level to
provide coaching
• High activation associated with behaviours likely
to benefit health
• Interventions that increase PAM score also
increase adoption of healthy behaviours
• High PAM score associated with high trust
NHS Kidney Care. Summary of the Evidence on Performance of the Patient
Activation Measure. May 2012.
1.When all is said and done, I am the person who is
responsible for taking care of my health
•Disagree
Strongly
•Disagree
•Agree
•Agree
Strongly
•N/A
1.Taking an active role in my own health care is the most
important thing that affects my health
•Disagree
Strongly
•Disagree
•Agree
•Agree
Strongly
•N/A
1.I am confident I can help prevent or reduce problems
associated with my health
•Disagree
Strongly
•Disagree
•Agree
•Agree
Strongly
•N/A
1.I know what each of my prescribed medications do
•Disagree
Strongly
•Disagree
•Agree
•Agree
Strongly
•N/A
1.I am confident that I can tell whether I need to go to the
doctor or whether I can take care of a health problem
myself.
•Disagree
Strongly
•Disagree
•Agree
•Agree
Strongly
•N/A
1.I am confident that I can tell a doctor concerns I have
even when he or she does not ask.
•Disagree
Strongly
•Disagree
•Agree
•Agree
Strongly
•N/A
1.I am confident that I can follow through on medical
treatments I may need to do at home
•Disagree
Strongly
•Disagree
•Agree
•Agree
Strongly
•N/A
1.I understand my health problems and what causes
them.
•Disagree
Strongly
•Disagree
•Agree
•Agree
Strongly
•N/A
1.I know what treatments are available for my health
problems
•Disagree
Strongly
•Disagree
•Agree
•Agree
Strongly
•N/A
1.I have been able to maintain (keep up with) lifestyle
changes, like eating right or exercising
•Disagree
Strongly
•Disagree
•Agree
•Agree
Strongly
•N/A
1.I know how to prevent problems with my health
•Disagree
Strongly
•Disagree
•Agree
•Agree
Strongly
•N/A
1.I am confident I can figure out solutions when new
problems arise with my health.
•Disagree
Strongly
•Disagree
•Agree
•Agree
Strongly
•N/A
1.I am confident that I can maintain lifestyle changes, like
eating right and exercising, even during times of stress.
•Disagree
Strongly
•Disagree
•Agree
•Agree
Strongly
•N/A
Patient activation measure
‘SURE’ questionnaire
Other measurement options
• Range of free, validated measurement
instruments from Ottawa
– Decision regret scale
– Decisional conflict score
– Preparation for decision-making
– Stage of decision-making
– Effective consumer scale
Outline
• Jargon: empowerment, activation, shared
decision-making
• Why are policy-makers so interested?
• Why should physicians be interested?
• Measurement
• Patient decision aids
• Renal Patient View
Patient decision aids
• Aim to do three things to prepare someone
to make a healthcare decision:
– Provide facts about the person’s condition,
the options, and their features
– Help patients to clarify their own values (the
features that matter most to them)
– Help patients to share their beliefs with their
healthcare professional and others, so that a
course of action can be planned that matches
their values
IPDAS – International Patient Decision Aid Standards Collaboration
www.ipdas.ohri.ca
+ 3 boxes for ‘daily routine’, ‘daily sugar testing’, ‘side effects’
Personalised risk scores
What if statins, get to BMI 25, stop
smoking, get SBP down to 140?
64y, male, moderate smoker,
type 2 DM, Chol:HDL 6.0, SBP
154, weight 90kg, height 170cm
http://QIntervention.org
http://mayoresearch.mayo.edu/mayo/research/ker_unit/upload/StatinDecAid_
ELEV_Mayo.pdf
QIPP Right Care programme http://sdm.rightcare.nhs.uk/pda
Outline
• Jargon: empowerment, activation, shared
decision-making
• Why are policy-makers so interested?
• Why should physicians be interested?
• Measurement
• Patient decision aids
• Renal Patient View
Renal Patient View
• Website giving kidney patients access to
test results, letters, diagnoses, plus
explanations, patient forum
• Option to record BP and other information
e.g. QoL scores
– Not yet ‘written back’ into renal IT systems
• Capitation fee £3.00 per patient per year
• Available in most, but not all, UK centres
Future plans and possibilities
• Collect home BP, blood glucose, etc via RPV
• Collect PROMs, PREMs, and measures of
decision quality via RPV
• Provide individualised PDAs, based on age,
PRD, co-morbidity, previous history, to inform
future decisions
• Provide ‘what are my options for treatment’
version of clinical practice guidelines
Summary
• The extent to which patients make
decisions about healthcare based on their
own preferences and values
– Is a predictor of health-related behaviour,
including adherence to Rx
– Can be increased by interventions, e.g. use of
PDAs, or even simple overt ascertainment of
values and preferences
– Is a marker of high-quality healthcare