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Patient’s Choices in Practice – Results from Listening to Patients in Spain

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Patient’s Choices in Practice – Results from Listening to Patients in Spain. Jovell A. eHealth week 2010 (Barcelona: CCIB Convention Centre; 2010)

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Patient’s Choices in Practice – Results from Listening to Patients in Spain

  1. 1. The Patient’s & Consumers Perspective Juan García invictus experience with diabetes Albert J Jovell, MD, DPH, PhD
  2. 2. Talking about Juan… 1. A typical clinical/social case 2. Living in a complex world 3. That needs ans answer and a strategy 4. While makes us discover some realities & unexpected challenges The Patient Exist
  3. 3. What happens (1st part) “65 years old male diagnosed with type 2 diabetes with high LDL & high triglycerides” Juan’s story )
  4. 4. Juan major therapeutic goals Reduce risk of cardiovascular disease and complications associated with diabetes
  5. 5. Juan Therapeutic Plan Metformin Glitazone Statin Fibrates Diet POLIMEDICATION AND COMPLEX INTERVENTIONS
  6. 6. And more complexity… Aspirin Exercise Glucose Self-monitoring Blood pressure 130/80 Glicosilade Hemoglobin less than 7
  7. 7. Juan needs appointments: General Practitioner Endocrinologist Nurse Community Pharmacist Dietist
  8. 8. He should - Understand his clinical condition and the risks associated with it - Understand the treatment plan -Be compliant - Take care of himself
  9. 9. Juan lives in a world of complexity with… that’s real life! Increasing diagnostic and therapeutic tools Less money for health care Increasing health needs A chronic pattern of disease Few docs and nurses An empowered patient
  10. 10. He googled (maybe was his daughter) Diabetes: 62.000.000 (NSB compared with 163.000.000 Cancer references) Diabetes type 2: 18.200.000 Diabetes treatment: 6.520.000 Metformin: 76.300 Aspirin & diabetes: 3.580.000 Abril 2008
  11. 11. What really happens (2nd part) 1. He has hearing problems 2. He lives alone 3. He has some memory lost 4. He suffers information overload 5. He has too many therapeutic goals to meet 6. He turns melancholic
  12. 12. My challenges/goals as Juan doc • Increase his diabetes literacy • A good therapeutic adherence • Better self monitoring • Side effects monitoring • Beware with interactions and iatrogenic events • Reduce unexpected events and complications • (People from NICE want a good QALY)
  13. 13. Hot questions 1. Does Juan want empowerment? 2. Has Juan a realistic free choice decision making scenario? 3. Is Juan well trained to make those decisions who benefit him the most? 4. Is our health care system honest with Juan? 5. Is eHealth helping Juan?
  14. 14. That’s Spain folks… 1. High prevalence of chronic disease and comorbidities. 2. Low compliance with medical prescriptions 3. Lack of good quality information 4. Short duration of medical appointments 5. Low level of health literacy
  15. 15. More that’s Spain folks… 6. Aging population 7. A political promise of excellence, effectiveness and equity (a market for voters) 8. Bureaucratic system 9. Too many governments 10. Lack of coordination among levels of care and among professionals 11. Slow governments support to patients movement (with exception of Catalonia) 1. l
  16. 16. Respondiendo al nuevo modelo de paciente BIG PATIENT KNOWLEDGE ORGANIZATION GENERATION & PATIENT 24 /1041 / 685.276 EMPOWERMENT SPANISH PATIENT FORUM PATIENTS’ UNIVERSITY
  17. 17. The Patients’ University Project
  18. 18. What we try to do PARTICIPACIÓN EN POLÍTICA SANITARIA ACCESIBILIDAD A NUEVOS TRATAMIENTOS E N F. INFORMATIONDE DECISIONES TOMA EDUCATION R S R E C E A E N A S L U D F. REDUCACÍÓN MÉDICA P A P U M E R D D I L A D Á P E I I R Z R DERECHOS DE LOS PACIENTES T R N O C A A H K M I E A L A B T E I E D C S T L O N A E O I N N O INFORMACIÓN TERAPÉUTICA A S I Ó RESEARCH D E S G Í C E S M T E SUPPPORT R I M E S T A L A O O N H COMUNICACIÓN A A R MÉDICO-PACIENTE S O R N L R
  19. 19. HEALTH LITERACY Focus Ability to understand what happens with your health, what you need, and then take care of your health (or other people’s health)
  20. 20. 35 websites
  21. 21. THE MEDICAL APPOINTMENT TOOLKIT www.universitatpacients/aula-es1 PREPARING THE APPOINTMENT WAITING DURING THE APPOINTMENT AFTER THE APPOINTMENT WE ARE WITH YOU DURING YOUR MEDICAL APPOINTMENT
  22. 22. 2. RESEARCH Needs, experiences and opinions
  23. 23. What our patient knows… How diabetes affects his daily life and what is his experience as a patient His attitude about risk His values and preferences (including diet and exercise) What he understands about this disease called diabetes How it affects his social and family lifes
  24. 24. RESEARCH
  25. 25. Training programs at the Patients’ University PARTICIPANTS SKILLS PROGRAM Chronic • Self-management. 1. Chronic Disease Self patients, • Skills related to a Management Program relatives and specific disease or (“Tomando control de carers field su salud”) of knowledge. 2. “Specialist patient” • Teaching and program communication. 3. “Tutor patient” program Health • Promotion of health 4. “Tutor professional” professionals and self-management. program Volunteers • Accompaniment to 5. Tutor Volunteer” patients and relatives. program
  26. 26. Chronic Disease Self Management Program (“Tomando control de su salud”) http//patienteducation.stanford.edu
  27. 27. “Specialist Patient” program Teaching patients in the management of a specific chronic disease, or a field of interest. Chronic disease Specific Target Competence or field of interest Asthma Use of a inhaler Diabetes Insuline self-administration Cardiovascular risk Mesure blood-pressure level Kidney disease Fistule care Cancer Management of chemo-therapy side effects Arthritis Pain management Management of patients’ Achieve a communication plan associations Patient-physician Preparing the medical relationship appointment Search of health Quality assessment of a web information reference
  28. 28. Patient Cancer Navigation Journey
  29. 29. The book for Children
  30. 30. Patient Empowerment (what a beautiful word)(i) Once the patient has Has he been the information, educated to be should he be accountable and accountable of his take care of himself? decision?
  31. 31. The empowered patient (Juan daughter) Is the Once the patient professional get appropriate ready to accept an active knowledge and patient? training
  32. 32. Take home thoughts • Consumer is not the same that patient • Big gap among European countries • Major gap between theory and real life, between wishes and realities • eHealth still promising • People trust docs and distrust politicians • Making choices needs high leves of health literacy
  33. 33. MANY THANKS www.webpacientes.org/fep www.universidadpacientes.org www.fbjoseplaporte.org albert.jovell@uab.cat

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