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Patient involvement

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  1. 1. <ul><li>Andreas Hager, Patienteer, Health care development leader </li></ul><ul><li>[email_address] </li></ul><ul><li>Anna Essén , Ph D Business Administration, Stockholm University </li></ul><ul><li>[email_address] </li></ul><ul><li>Carina Andrén , Care Designer and Patient, Karolinska University Hospital </li></ul><ul><li>[email_address] </li></ul><ul><li> </li></ul>1 P2I Care – A research network P2I – The individual Patient, Provider and Information used The locus of health care improvement
  2. 2. Patient Provider IS / IT The clinical microsystem - the atom of health care to be redesigned
  3. 3. 4500 hrs the last 78 months
  4. 4. Sending sputum and doing monthly check-ups
  5. 5. Testing stuff from the web
  6. 6. And being luckily at a good place
  7. 7. Calling the office [sound clip]
  8. 8. There are easy to use tools
  9. 9. There are even simple web resources emerging, showing the way [Movie clip]
  10. 10. There are measures that mean something for all the stakeholders
  11. 11. And we develop some things one on one
  12. 12. Something is missing, there is so much opportunity and so much energy lost in space
  13. 13. This is me, I am a patienteer
  14. 14. Dreaming about what could be healthcare in society
  15. 15. - And have PER - And do PEP - And start a PEO movement? - If I could be at PEF not FEV1 - raising the bar
  16. 16. Meeting this guy
  17. 17. And Anna
  18. 18. Staffan has this – movie clip BCG filmen
  19. 19. Using Quality Registries to empower patients
  20. 20. The Swedish Rheumatology Quality Registry <ul><li>The first patient was included in 1995 . </li></ul><ul><li>National coverage (69 clinics). </li></ul><ul><li>649 registered users. </li></ul><ul><li>37.164 patients included in 2010 </li></ul><ul><li>34.252 patients in treatment </li></ul><ul><li>225.307 visits documented in total. </li></ul><ul><li>31 171 visits per year. </li></ul><ul><li>Includes 55 diagnoses including: </li></ul><ul><li>Arthritis, spondylitis, </li></ul><ul><li>Inflammatory diseases and vasculites, </li></ul><ul><li>Juvenile rhematoid diseases </li></ul><ul><li> 2010-08-30 </li></ul>20 [email_address]
  21. 21. Statistics Counties in Sweden Number of visits last year Registered patients Coverage
  22. 22. RA-registry homepage, To log on to the register database and PER General information about the register Updated news regarding the register
  23. 23. Professional’s view Search for a patient Menue for your clinic Menue for statistical tools Menue for administration of user account
  24. 24. Search patient Latest disease activity Deceased patient Patient personal number, name, diagnose and clinic Date of last visit
  25. 25. PER- Patientent’s sElf Registration 25
  26. 26. Available from home via national online access platform [email_address] 26
  27. 27. Patient’s self-assessment Pain estimation via VAS entered by patient Patient’s self-assessment of swollen and tender joints
  28. 28. 28
  29. 29. Answer questions about pain,joint swollenness, daily function, quality of life Patient gets printed overview of assessments over time, including medications and lab-tests. The specialist examines the patient, informed by the patient’s self-assessment Patient and specialist goes through results and treatment together
  30. 30. Studies show.... <ul><li>Hvitfeldt, Helena et al. Feed forward systems-for patient participation and provider decision support. Quality Management in Health Care. 2009. </li></ul><ul><li>Eldh, Ann-Catrine. Patient participation-what it is and what it is not. Örebro Universitet. 2006 </li></ul><ul><li>Augustsson, Jenny et al. Patient- reported swollen and tender 28-joint counts accurately represent RA disease activity and can be used to </li></ul><ul><li>calculate DAS28 on a group level. ACR 2008 </li></ul><ul><li>Houssien D.A et al. A patient-derived disease activity score can substitute for a physician-derived disease activity score in clinical research. 1999. </li></ul><ul><li>Providers’ opinions about PER – </li></ul><ul><li>Great overview of status and treatment </li></ul><ul><li>The overview makes desicions easier to make </li></ul><ul><li>Work gets more structured </li></ul><ul><li>Data is directly connected to health care </li></ul><ul><li>Saves time </li></ul><ul><li>Great tool for follow up </li></ul><ul><li>The visit gets more efficient </li></ul>Patiens definition of involvement : * Knowledge about my body, treatments, the disease and medicines * To be a part of the planning process * To be heard and understood * To be trusted ” Medicines control my whole life – of course I like to be part of the treatment decisions ” There is a small difference between physicians and patients joint status. <ul><li>Patients’ opinions about PER– </li></ul><ul><li>Easy to follow disease progress </li></ul><ul><li>Makes you involved in your own care </li></ul><ul><li>The overview is plain and clear </li></ul><ul><li>Overall impression is great </li></ul><ul><li>Great tool regardless of earlier computer use </li></ul><ul><li>Easy to see treatment effect </li></ul><ul><li>The system concretizes how I actual feel </li></ul>–
  31. 31. Why is PER a useful tool for patients? <ul><li>One learns to manage the disease </li></ul><ul><li>Increases sense of responsibility </li></ul><ul><li>Creates a personalized care process </li></ul><ul><li>Enables me to identify patterns </li></ul><ul><li>Provides me with a structured diary </li></ul><ul><li>Provides ’proof’ of my view and evidence improving research </li></ul><ul><li>Gives me power as my subjective assessment is ’evidence’ </li></ul>31 [email_address]
  32. 32. PER – integrated in everyday practice <ul><li>Not an isolated ’add-on’ </li></ul><ul><li>Directly influences professionals’ decisions in everyday situations </li></ul><ul><li>Generates evidence of the results of care </li></ul><ul><li>Provides numerous research opportunities </li></ul>
  33. 34. So we can now imagine and see some solutions. Not only calling in. But having networks connect.
  34. 35. Yet, there is still a long way to go. We need to continue working on the challenges.