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Information in the new world:
can we make cancer data count?



       Brian Cottier Invitation Lecture


                            June 2011




                                (c) MHP, 2011
About me


• Managing Director, MHP Health Mandate

• Multi-award-winning specialist health policy
  consultancy

• Role in supporting the development of Improving
  Outcomes: a Strategy for Cancer and the Cancer
  Reform Strategy

• Work closely with the NCIN




(c) MHP, 2011
What I’ll cover


     • Why information matters in the new world

     • Do we need a supply or demand side information
       revolution?

     • Translating intelligence into action



(c) MHP, 2011
Why information matters in
     the new world




(c) MHP, 2011
16/06/2011   5
• INSERT OUTCOMES FRAMEWORK




(c) MHP, 2011   Source: Department of Health, The NHS Outcomes Framework 2011/12, December 2010
Information is critical to Improving
   Outcomes: A Strategy for Cancer




                                                                                               information




         Source: word cloud analysis of Department of Health, Improving Outcomes: A Strategy for Cancer, January 2011
(c) MHP, 2011
A supply or demand side
     revolution?




(c) MHP, 2011
Improving outcomes requires a supply and
     demand side revolution

                     •Data collection




                                                 Outcomes
            Supply   •Data quality
                     •Linking data sets
                     •Clinical audit




                     •Informed choice

         Demand      •Stronger commissioning
                     •Professional improvement
                     •Clearer accountability


(c) MHP, 2011
Using the information cycle to improve
     cancer outcomes

                                    Activity




                 Action                                  Data




                     Intelligence              Information



(c) MHP, 2011
Good progress has been made on many aspects
  of information – but we need to translate this to
  action

                                   Activity




                Action                                  Data




                    Intelligence              Information



(c) MHP, 2011
Translating intelligence into
     action




(c) MHP, 2011
Making data count – some examples


                Commissioners                Providers
           finding the 5,000 lives         improving patient
                   to save                    experience



                                Patients
                            enabling informed
                                  choice

(c) MHP, 2011
Why commissioners need information


     To:
     • Identify priorities

     • Scrutinise the performance of providers (quality and cost)

     • Respond to the needs of patients / the public

     • Enable informed scrutiny



(c) MHP, 2011
Commissioning prioritisation works – but can we use
                         data to get the next generation of commissioners to
                         prioritise the right issues?
                                          Change in breast screening coverage, 2008/9
                                  40
  Percentage change in coverage




                                  30

                                  20

                                  10

                                   0

                                  -10

                                  -20            PCTs that selected   PCTs that did not
                                                 the indicator        select the indicator


                                  -30

                                               Source: MHP Health Mandate, Commissioning in the new world, August 2010
(c) MHP, 2011
Finding the 5,000 (cancer types)
 1200                                                                                                                 14%

 1000                                                                                                                 12%

                                                                                                                      10%
   800
                                                                                                                      8%
   600
                                                                                                                      6%
   400
                                                                                                                      4%
   200                                                                                                                2%

      0                                                                                                               0%




                        Lives saved to reach European average              Avoidable deaths as % of total mortality

 * Analysis does not include prostate cancer

                                            Source: Data derived from Abdel-Rahman et al, BJC Supplement December 2009;
(c) MHP, 2011                                                                   ONS, registrations of cancer deaths, 2009
Targeting action where it is needed most


     Where do excess deaths occur?

     •     Geography
     •     Age
     •     Socioeconomic status
     •     Ethnicity
     •     Gender
     •     Sexuality
     •     Disability
     •     Religion


(c) MHP, 2011
Why providers need information

     To:
     • Monitor quality

     • Learn from good practice

     • Target improvements (quality and cost)

     • Respond to the needs of commissioners and patients



(c) MHP, 2011
Most providers have examples of good and poor
         practice – can we use data to enable them to target
         improvements in the right areas?
   50                       Provider performance on patient experience

   45
   40
   35
   30
   25
   20
   15
   10
     5
     0
                          Number in top 20%          Number in bottom 20%

(c) MHP, 2011
                         Source: MHP Health Mandate analysis of National Cancer Patient Experience Survey 2010
Some providers are incentivised on improving patient
       experience – can we use this as a tool to encourage
       improvement amongst the ‘reds’?
        50                   Performance of providers with CQUINs relating to patient experience

        45
        40
        35
        30
        25
        20
        15
        10
          5
          0
                                      Number in top 20%           Number in bottom 20%


(c) MHP, 2011
                Source: MHP Health Mandate analysis of ProvIT database and National Cancer Patient Experience Survey 2010
Why patients need information


       To:

       • Learn more about what happened to patients like them

       • Assess their options

                Make informed choices based on what matters to them




(c) MHP, 2011
                Source: MHP Health Mandate analysis of ProvIT database and National Cancer Patient Experience Survey 2010
What do patients want to know?
                                                      What clinical
                                                      outcomes for my type
                                                      of cancer are achieved
                                                      here compared with
                                                      other hospitals?
                                                      [Would I have a better
                                                      chance of surviving
                                                      somewhere else?]




(c) MHP, 2011             Source: focus groups conducted by Joanne Rule (unpublished)
What do patients want to know?
                                                      How well do patients
                                                      with my type of
                                                      cancer rate their
                                                      experience of care?
                                                      [No point telling me
                                                      about general
                                                      satisfaction levels]




(c) MHP, 2011             Source: focus groups conducted by Joanne Rule (unpublished)
What do patients want to know?
                                                      How will this
                                                      diagnosis affect the
                                                      rest of my life? What
                                                      kind of back up will
                                                      there be when I go
                                                      home?




(c) MHP, 2011             Source: focus groups conducted by Joanne Rule (unpublished)
What do patients want to know?
                                                     Will the doctor listen
                                                     to me? Will a nurse
                                                     actually come if I use
                                                     my call button?




(c) MHP, 2011             Source: focus groups conducted by Joanne Rule (unpublished)
What do patients want to know?
                                                      Do the professionals
                                                      communicate well
                                                      with each other?
                                                      Will I be able to
                                                      attend when they
                                                      discuss my case?




(c) MHP, 2011             Source: focus groups conducted by Joanne Rule (unpublished)
How can we apply intelligence to inform
     patients about what they want to know?

     Information on service quality is currently:

     •     Too general
     •     Out of date
     •     Available only from disparate sources
     •     Not contextualised
     •     Not easily comparable
     •     Presented poorly

                The work of the NCIN provides a
                    platform to change this

(c) MHP, 2011                          Source: MHP Health Mandate, Accounting for quality, September 2010
In summary


     • Cancer has led the Information Revolution, but there is a long
       way to go

     • The NCIN has helped deliver a leap forward in terms of the
       intelligence available

     • We all have a role to play in translating intelligence into action
       to improve outcomes

                   Let’s work together to make data count


(c) MHP, 2011
For more information please contact:

Mike Birtwistle
Email: mike.birtwistle@mhpc.com
Twitter: @mbirty
Website: www.mhpc.com/health

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Information in the new world: Can we make cancer data count?

  • 1. Information in the new world: can we make cancer data count? Brian Cottier Invitation Lecture June 2011 (c) MHP, 2011
  • 2. About me • Managing Director, MHP Health Mandate • Multi-award-winning specialist health policy consultancy • Role in supporting the development of Improving Outcomes: a Strategy for Cancer and the Cancer Reform Strategy • Work closely with the NCIN (c) MHP, 2011
  • 3. What I’ll cover • Why information matters in the new world • Do we need a supply or demand side information revolution? • Translating intelligence into action (c) MHP, 2011
  • 4. Why information matters in the new world (c) MHP, 2011
  • 6. • INSERT OUTCOMES FRAMEWORK (c) MHP, 2011 Source: Department of Health, The NHS Outcomes Framework 2011/12, December 2010
  • 7. Information is critical to Improving Outcomes: A Strategy for Cancer information Source: word cloud analysis of Department of Health, Improving Outcomes: A Strategy for Cancer, January 2011 (c) MHP, 2011
  • 8. A supply or demand side revolution? (c) MHP, 2011
  • 9. Improving outcomes requires a supply and demand side revolution •Data collection Outcomes Supply •Data quality •Linking data sets •Clinical audit •Informed choice Demand •Stronger commissioning •Professional improvement •Clearer accountability (c) MHP, 2011
  • 10. Using the information cycle to improve cancer outcomes Activity Action Data Intelligence Information (c) MHP, 2011
  • 11. Good progress has been made on many aspects of information – but we need to translate this to action Activity Action Data Intelligence Information (c) MHP, 2011
  • 12. Translating intelligence into action (c) MHP, 2011
  • 13. Making data count – some examples Commissioners Providers finding the 5,000 lives improving patient to save experience Patients enabling informed choice (c) MHP, 2011
  • 14. Why commissioners need information To: • Identify priorities • Scrutinise the performance of providers (quality and cost) • Respond to the needs of patients / the public • Enable informed scrutiny (c) MHP, 2011
  • 15. Commissioning prioritisation works – but can we use data to get the next generation of commissioners to prioritise the right issues? Change in breast screening coverage, 2008/9 40 Percentage change in coverage 30 20 10 0 -10 -20 PCTs that selected PCTs that did not the indicator select the indicator -30 Source: MHP Health Mandate, Commissioning in the new world, August 2010 (c) MHP, 2011
  • 16. Finding the 5,000 (cancer types) 1200 14% 1000 12% 10% 800 8% 600 6% 400 4% 200 2% 0 0% Lives saved to reach European average Avoidable deaths as % of total mortality * Analysis does not include prostate cancer Source: Data derived from Abdel-Rahman et al, BJC Supplement December 2009; (c) MHP, 2011 ONS, registrations of cancer deaths, 2009
  • 17. Targeting action where it is needed most Where do excess deaths occur? • Geography • Age • Socioeconomic status • Ethnicity • Gender • Sexuality • Disability • Religion (c) MHP, 2011
  • 18. Why providers need information To: • Monitor quality • Learn from good practice • Target improvements (quality and cost) • Respond to the needs of commissioners and patients (c) MHP, 2011
  • 19. Most providers have examples of good and poor practice – can we use data to enable them to target improvements in the right areas? 50 Provider performance on patient experience 45 40 35 30 25 20 15 10 5 0 Number in top 20% Number in bottom 20% (c) MHP, 2011 Source: MHP Health Mandate analysis of National Cancer Patient Experience Survey 2010
  • 20. Some providers are incentivised on improving patient experience – can we use this as a tool to encourage improvement amongst the ‘reds’? 50 Performance of providers with CQUINs relating to patient experience 45 40 35 30 25 20 15 10 5 0 Number in top 20% Number in bottom 20% (c) MHP, 2011 Source: MHP Health Mandate analysis of ProvIT database and National Cancer Patient Experience Survey 2010
  • 21. Why patients need information To: • Learn more about what happened to patients like them • Assess their options Make informed choices based on what matters to them (c) MHP, 2011 Source: MHP Health Mandate analysis of ProvIT database and National Cancer Patient Experience Survey 2010
  • 22. What do patients want to know? What clinical outcomes for my type of cancer are achieved here compared with other hospitals? [Would I have a better chance of surviving somewhere else?] (c) MHP, 2011 Source: focus groups conducted by Joanne Rule (unpublished)
  • 23. What do patients want to know? How well do patients with my type of cancer rate their experience of care? [No point telling me about general satisfaction levels] (c) MHP, 2011 Source: focus groups conducted by Joanne Rule (unpublished)
  • 24. What do patients want to know? How will this diagnosis affect the rest of my life? What kind of back up will there be when I go home? (c) MHP, 2011 Source: focus groups conducted by Joanne Rule (unpublished)
  • 25. What do patients want to know? Will the doctor listen to me? Will a nurse actually come if I use my call button? (c) MHP, 2011 Source: focus groups conducted by Joanne Rule (unpublished)
  • 26. What do patients want to know? Do the professionals communicate well with each other? Will I be able to attend when they discuss my case? (c) MHP, 2011 Source: focus groups conducted by Joanne Rule (unpublished)
  • 27. How can we apply intelligence to inform patients about what they want to know? Information on service quality is currently: • Too general • Out of date • Available only from disparate sources • Not contextualised • Not easily comparable • Presented poorly The work of the NCIN provides a platform to change this (c) MHP, 2011 Source: MHP Health Mandate, Accounting for quality, September 2010
  • 28. In summary • Cancer has led the Information Revolution, but there is a long way to go • The NCIN has helped deliver a leap forward in terms of the intelligence available • We all have a role to play in translating intelligence into action to improve outcomes Let’s work together to make data count (c) MHP, 2011
  • 29. For more information please contact: Mike Birtwistle Email: mike.birtwistle@mhpc.com Twitter: @mbirty Website: www.mhpc.com/health