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PKB’s theory of change

Inputs

Outcomes

  • Sales team
  • Product team
  • Development team
  • Success team
  • Technical support team
  • Information governance team
  • Privacy model
  • Software and servers
  • Graphical user interface
  • Application programming interface

Better self-care

  1. Patient believes active role is important

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  • Patient gains confidence and knowledge to take action

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Impact

Improved patient health outcomes

Short-term

Mid-term

Long-term

2. Mass registration of patients

3. Patients and providers discuss record for shared understanding

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4. Providers discuss record for shared understanding

Outputs

Activities

 

2. Server and software maintenance and tech support

4. Accounts management

5. Government engagement

Better clinical decision-making

5. Provider sees complete, single picture of patient’s health

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6. Provider understands patient’s health

3. Engagement with the system:

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  1. Patients
  2. Providers

1. Software design, development, and testing

  1. Complete, accurate, real-time SHARED record:

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  1. Synthesized clinical information
  2. Source labels
  3. Discussions
  4. Shared care plans
  5. Virtual clinics
  6. Security and full audit log
  7. Patient privacy choices

Increase in patient activation

Reduced hospitalizations

3. Patient and professional on-boarding

Increase in shared decision-making

Better adherence

Faster diagnoses

Fewer repeated tests

Health system efficiencies

Health system cost savings

Fewer emergency visits

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Outcome or Output

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Data Collection Method

Data Source & Frequency

Current Availability

Yes No

Notes

Indicator

Evaluated on plan

List the numbered Output or Outcome from the Logic Model; List each outcome on a separate line

List actual metrics used as proof of this Output or Outcome; indicate whether captured at system aggregate level or individual level (e.g., # of logins by patients; # times a patient sends a message to a provider)

Indicate how data are captured

(e.g., captured in PKB, available via customer)

List data source (e.g., exact PKB Data element) and frequency needed (e.g., ongoing; 1x upon onboarding and again at 3 months)

Are data available today as system exists or require extra considerations or arrangements e.g., new feature or survey administration

Output

1. Complete, accurate, SHARED real-time record

Synthesized clinical information

Number of data points in record

DB query counting rows of data

PKB

yes

Source labels

Number or sources of data (patient + 2 or more Organizations)

DB query counting unique sources of rows of data

PKB

yes

Discussions

Number of secure messages

Weekly reports

PKB

yes

Shared care plans

Number of care plans and number of editors of each care plan

DB query

PKB

yes

Virtual clinics

​

Number of secure messages with structured questionnaires

DB query

PKB

yes

Audio / Skype calls

Number of secure messages about Skype calls

DB query

PKB

yes

Security and full audit log

Number of times record accessed and number of users accessing record

DB query

PKB

yes

Patient privacy choices

Number of changes to default privacy labels, number of messages from patient with non-general privacy label

DB query

PKB

yes

2. Mass registration of patients

Patients onboarded

Number of patients with verified identity email address (by professional, coordinator, and letters API)

DB query

PKB

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3. Engagement with the system

Patients

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Log in activity, number of secure messages, files updated, symptoms added, care plans edited

Aggregate measure & individual engagement

Weekly report

PKB

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yes

Providers

Log in activity, secure messages, care plans edited

Aggregate measure & individual engagement

Total X number of engagement vs yes/no

Weekly report

PKB

yes

Outcome (short-term)

Patient believes active role is important

Self-reported: PAM questions (1,2, 4, 5, 8, 11)

Objective assessment: must test in manual questionnaire with provider

Add to PKB GUI (medications, discussions + care plans, diagnoses, care plans)

PKB: can we collect separately from whole questionnaire?

No must be used in whole

no

Patient gains confidence and knowledge to take action

PAM questions (3, 5, 6, 7, 9, 10, 11, 12, 13)

Add to PKB GUI

PKB: Push out to patients

no

Patients and providers discuss record for shared understanding

  1. Logins by patient and provider into patient’s record
  2. Number of participants in discussions in patient’s record Captured from PKB (discussions)
  1. DB query of patient’s access log
  2. DB query of patient’s discussions Weekly basis

PKB

yes

Providers discuss record for shared understanding

Providers send messages about patient in patient’s PKB record

Weekly basis

PKB

yes

Provider sees complete, single picture of patient’s health

Provider seen patient’s record (GUI or API)

Number of sources in PKB record

Patient is one of sources in PKB record

DB query

PKB

no

Provider understands patient’s health

Objective assessment: must test in manual questionnaire with provide

Via customer

JJCCT advice

no

Outcome (mid-term)

Increase in patient activation

PAM Score

PAM

Score

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Increase in shared decision-making

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Better Clinical Decision Making

?case studies, ?metrics,

? pkb indicator?

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Outcome (long-term)

Better self-care

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Number of Care plans? Messages ?

Pkb weekly report

PKB

Yes

Fewer emergency visits

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Virtual clinics

Pkb weekly report

PKB

Yes

Reduced hospitalizations

​

Case study

​

​

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Better adherence

​

?

​

​

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Faster diagnoses

​

Diagnosis entries, discussions

Pkb weekly report

PKB

Yes

Fewer repeated tests

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Tests (lab) discussions

Weekly report

PKB

Yes

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PAM13 questions (Patient Activation Measure)

1. When all is said and done, I am the person who is responsible for managing my health condition

2. Taking an active role in my own health care is the most important factor in determining my health and ability to function

3. I am confident that I can take actions that will help prevent or minimize some symptoms or problems associated with my health condition

4. I know what each of my prescribed medications do

5. I am confident that I can tell when I need to go get medical care and when I can handle a health problem myself

6. I am confident I can tell my healthcare provider concerns I have even when he or she does not ask

7. I am confident that I can follow through on medical treatments I need to do at home

8. I understand the nature and causes of my health condition(s)

9. I know the different medical treatment options available for my health condition

10. I have been able to maintain the lifestyle changes for my health that I have made

11. I know how to prevent further problems with my health condition

12. I am confident I can figure out solutions when new situations or problems arise with my health condition

13. I am confident that I can maintain lifestyle changes like diet and exercise even during times of stress

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Insignia Health already provided PKB with REST API for integration

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Patient Activation Measure Evidence

  • The Patient Activation Measure is a valid, highly reliable, unidimensional, probabilistic Guttman-like scale that reflects a developmental model of activation. Activation appears to involve four stages: (1) believing the patient role is important, (2) having the confidence and knowledge necessary to take action, (3) actually taking action to maintain and improve one's health, and (4) staying the course even under stress. Source
  • Using patient activation levels to more effectively and appropriately support patients appears to be a potentially important way for delivery systems to improve outcomes and lower costs.There is evidence that raising patient activation scores results in improved health outcomes. Source
  • Strengthening patients’ role in managing their health care can contribute to improved outcomes and that patient activation can—and should—be measured as an intermediate outcome of care that is linked to improved outcomes Source
    • Activated patients avoid health-damaging behavior (r=.46, p<.01) such as smoking and illegal drug use source
    • Fewer hospitalizations source
    • In patients with hypertension source
    • and chronic kidney disease (CKD) source high activation is associated with better blood pressure control source
  • The PAM was predictive for hemoglobin A1c (HgA1c) testing (P < .008), low-density lipoprotein cholesterol (LDL-C) testing (P < .005), HgA1c control (P < .01), and all-cause discharges (P < .03), but not for lipid-lowering drug use, LDL-C control, or acute myocardial infarction discharges. These results suggest that PAM scores can be used to identify patients at risk for poorer health outcomes. Source

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Patient Activation Measure in the UK

  • Patient activation and PAM FAQs Source
  • PAM lead to better outcomes, a better experience of care, healthier behaviours, and fewer episodes of emergency care that leads to lower costs for the NHS. Source Outcomes are:
      • engage in healthy behaviours like eating a healthy diet source source source
      • taking regular exercise source
      • diabetes: more-activated patients were more likely to perform foot checks, obtain eye examinations and exercise regularly than less-activated patients source
      • including body mass index (BMI), blood sugar levels (A1c), blood pressure and cholesterol source source source source
      • HIV patients found that every five-point increase in PAM scores was associated with a significant improvement in CD4 counts, adherence to drug regimens and viral suppression source
  • when patients are fully informed about their options and outcomes, they choose fewer treatments, reducing the gap between what they want and what doctors think they want. This has the potential to reduce the pressure on NHS services, improve quality and ensure that resources are focussed on those patients with the most complex health needs. Source
  • A survey of clinician attitudes and behaviours towards people taking an active role in their health and care concluded that:
    • People who have low levels of activation are believed to be less likely to play an active role in staying healthy.
    • They are believed to be less likely to seek help when they need it and less likely to follow a doctor’s advice.
    • They are believed to be more likely to attend accident and emergency departments, and to be hospitalised or re-admitted to hospital after being discharged. This is likely to lead to higher healthcare costs. Highly activated people are more likely to adopt healthy behaviour, have better clinical outcomes and lower rates of hospitalisation, and to report higher levels of satisfaction with services. Source
  • How engaged are people in their health care? J Ellins, A Coulter - Picker Institute Europe, 2005 Source

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Evaluation of Patient Activation Measure in the UK

  • PAM is a valid and appropriate tool for use with a UK population as well. Source
    • Methodology :national telephone survey of adults aged 45 and above. Three thousand interviews were conducted: 1,000 in England (excluding London), 500 in Wales, 500 in Scotland, 500 in Northern Ireland and 500 in London.
    • Findings
      • (72%) of respondents had been diagnosed with at least one chronic condition
      • Analysis of UK and US PAM scores revealed that there is less variation across the UK population in self-management ability
      • only 33% of those with poor health felt able to take and maintain action to improve their health, compared with 60% overall.
      • Skills for self-management also differed according to health status
      • When asked about their preferred sources of information, 73% mentioned their doctor. The next most commonly cited sources of health information were health websites (30%), printed materials (23%), nurses and other health professionals (22%) and family and friends (19%). Patient groups were mentioned by only 4% overall, and by only 5% of respondents with chronic conditions.
      • Use of the internet to find health information was most common among respondents from higher social grades, younger age groups, living in London and ethnic minority backgrounds. However, 40% of people from social grades DE but only 29% of ABs expressed an interest in using telephone helplines such as NHS Direct or NHS 24.

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Evaluation of feasibility of using the PAM in the NHS in England

  • From 2014 to 2016, NHS England worked with partners through an Action Learning Set to understand how PAM can increase and encourage person-centred and personalised care in the NHS. Source
    • Learning Set is comprised of five Clinical Commissioning Groups (CCGs) and the UK Renal Registry
      • Somerset CCG
      • Tower Hamlets CCG
      • Horsham and Mid Sussex CCG and Crawley CCG
      • Islington CCG
      • Sheffield CCG
    • 2 case studies used PAM-13
      • 1.Using PAM in telephone tailored health coaching
      • 2. Using PAM in diabetes care
    • Findings:
      • 1. The PAM is credited with helping to open up a conversation about patient priorities, particularly for those with multiple long-term conditions.
      • 2. Particularly for patients with whom the healthcare professional had an established relationship, the PAM could be used to increase confidence in abilities to self-manage.
    • One project was using a patient-held record (PKB - Patient Knows Best) to communicate across different service providers, which started to help overcome this challenge (p17 2.2.9)
    • Source

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Shared decision making evidence of outcomes

  1. Shared decision-making have significant positive effects on knowledge, social support and behavioural and clinical outcomes, and are more likely than not to have significant positive effects on self-efficacy: Source �
    1. Methodology : systematic review of 24 RCTs involving 3739 participants which were included in the review.
    2. Functional status (outcome improves as scale increases). Source
    3. Health status (outcome improves as scale increases). Source
    4. Reduction in HbA1c. Source
    5. Reduction in HbA1c. Source
    6. Physical function Improves. Source
    7. Decrease in days with asthma symptoms. Source
  2. Providing patients with congestive heart failure access to an online medical record was feasible and improved adherence. Source.
  3. Shared decision making about end-of-life treatment choices leads to greater family satisfaction. Shared decision making leads to better outcomes and quality improvement in intensive care units. Source

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Empowerment vs engagement

Empowerment = ability for independence

Definition is the discovery and development of one’s inherent capacity to be responsible for one’s own life. People are empowered when they have sufficient knowledge to make rational decisions, sufficient control and resources to implement their decisions, and sufficient experience to evaluate the effectiveness of their decisions. Empowerment is more than an intervention or strategy to help people make behavior changes to adhere to a treatment plan. Fundamentally, patient empowerment is an outcome. Patients are empowered when they have knowledge, skills, attitudes, and self-awareness necessary to influence their own behavior and that of others in order to improve the quality of their lives. Empowerment: An Idea Whose Time Has Come in Diabetes Education.

Engagement = interest and activity

Definition: "patient engagement – where the patient is encouraged to take an active role as a key player in protecting their health, choosing appropriate treatments for episodes of ill health and managing chronic disease" Where are the patients in decision-making about their own care? ��Engagement is a further development, referring to working in partnership with service-users having them inform (i) service redesign/improvement, (ii) policy, (iii) research and (iv) their own care/treatment. It is the first three of these which are conceptually most similar and are addressed in this paper. Engagement involves a collaboration which demands understanding rather than purely an information seeking process Forbat L, Hubbard G, Kearney N. Patient and public involvement: models and muddles.

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PKB index of activity

  • Engaged: logging in at least once every 4 weeks
  • Active: added data point at least once every 4 weeks
    • Data points include messages, symptoms, tests manually added and measurements automatically synchronised from devices
  • Collaborative: Logged in within 1 week of data point from professional
    • ? should this be an indicator of shared decision-making?

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Patient journey for PKB registration

  • Most PKB customers registered their patients at the same time as creating the record for these patients.
    • Typically his happens in clinic with the health professional offering this to the patient
    • Patients have high interest when their professional make the offer
    • Patients have high registration completion rates (about 70%)
    • But labour-intensive so few professionals have slowly offered this to limited Patients
  • Now switching to mass registration
    • Letter to homes of all Patients or automated kiosk in all outpatient clinics
    • One-time letter campaign had produced 30% completion rate
    • Customer needs 20% for cash ROI
    • Much more scalable and much faster onboarding of patients

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Messaging C&W

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Messaging Plymouth

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Messaging St Mark’s

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Labs Plymouth

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Labs CNW

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Labs St Mark’s

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New design makes it easy to see collaboration

but we need to figure out a quantitative measurement

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Research Question

Define the research Question/s

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  • What is Patients Know Best (PKB’s) social impact for patients?

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Research Plan

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  • Define the research objectives derived from the research question

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  • Specify the sources from which we intend to collect data

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  • Demonstrate the elements of our particular research design
    • Methodological choices (e.g. quantitative, qualitative or mixed method)
    • Strategy (e.g. , case study, survey, archival research)
    • Time horizon (e.g. cross-sectional, or longitudinal)
    • Techniques and procedures (how we propose to collect and analyse data)

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  • Discuss ethical issues and the constraints we will inevitably encounter
    • ie access to data, money, location , time,
    • ethical issues associated with internet mediated research, such as respect of privacy, lucking respect and causing harm
    • there are also ethical issues with the analysis of data and reporting of findings- management of the data
    • Do we need ethics approval?

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Research Plan

Define the research objectives

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PKB usage is correlated with increase in patient activation, increase in shared decision-making, and better clinical decision-making.

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  • To track, examine the influence of PKB usage on the PAM score
    • PAM score is correlated with better self-care, improved patient health outcomes, and reduced health system costs
    • measure activation and engagement ( as per PKB index of activity engaged vs activated pt)

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  • To track the influence of PKB usage on shared decision - making
    • Shared decision–making is correlated with better self-care, improved patient health outcomes, and reduced health system costs (according to literature)
    • measure how much patients use PKB (how many registered pt in PKB and usage activity)
    • how PKB has been used for shared decision making ( sources labels/as per PKB index?)

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  • To track the influence of PKB usage on better clinical decision-making
    • use of case studies (L&D, NB Trauma)

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Research Plan

Sources of data collection

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  • Hospitals (NB and/or L&D)
  • providers (professionals/ teams ie trauma team at NB)
  • patients

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Elements of research design

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  • Methodological choice: Quantitative method

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  • Quantitative method (measure how much) or qualitative (measure why) research or mix methods?
  • If we measure how much engaged are the pts then we can go for quantitative method
  • If we measure why the patients are engaged or activated then we go for qualitative method
  • Do we need a qualitative research?
  • How much engaged with the system the provides are? (quantitative)
  • Why the providers are engaged with the system? (qualitative)

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Elements of research design

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  • Strategy

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  • Case Study ( of NB / L&D to identify better clinical decision making)

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  • Survey

PKB will administer the 13-point Patient Activation Measure survey at baseline and repeat intervals to track improvements over time and correlate with system usage

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  • PKB reports (archival research) (weekly reports/ database queries etc)

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PKB will perform a combination of strategies for a specific hospital (L&D and/or NB) within a specific patients cohort. Then we will perform a survey (PAM etc) finally we will perform the archival research collecting the data points (weekly reports/DB queries etc)

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Elements of research design

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  • Time horizon:

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A snapshot taken at a particular time (cross –sectional study) or a series of snapshots over a given period (longitudinal study)?

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  • Longitudinal study

PKB will administer the 13-point Patient Activation Measure survey at baseline and repeat intervals to track improvements over time and correlate with system usage. We can run an RCT with pre and post PAM scores (ie: we decide one patients’ group for example trauma team at NB and we ask the pts to complete manually the PAM Q. Then the team onboards them onto PKB and after X time will complete again the PAM Q based on the fact that now are on PKB.)

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Techniques and procedures

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  • Collection of data
    • how will the data collection will be performed? Via PAM, calls, interviews, consultations, weekly reports, what metrics?

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  • how are we going to collect the data?
  • What metrics are we going to use?
  • Is PAM Q the only tool?

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  • Patients:
    1. PAM score pre and post PKB
    2. Consultations?
    3. Interviews?
  • Hospitals
    • North Bristol?
    • Luton and Dunstable?

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Techniques and procedures

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  • Analysis of data
  • Use of statistical analysis to explore, present, describe and examine relationships within our data

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  • Use of IBM SPSS Statistics software
  • to prepare, input and check data
  • Exploratory data analysis to explore and present data (e.g. specific values, highest and lowest values, trends over time, proportions, normal distributions, totals, independence and relationships)
  • Descriptive statistics to describe and compare variables numerically (e.g. frequency, median, means, standard deviation)
  • Statistical significance test to examine relationships within our data, correlation coefficient to assess the strength of relationships, regression analysis to assess the strength of a cause-and-effect relationship between dependent and independent variables

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