Patient Designed Healthcare

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What do patients understand as quality healthcare is not the same as what healthcare providers and policy makers understand

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Patient Designed Healthcare

  1. 1. Patient-designed healthcare: an utopia or the new reality? Kathi Apostolidis-Vice President European Cancer Patient Coalition
  2. 2. ECPC-European Cancer Patient Coalition • Established in 2003 • Only European organization governed by cancer patient groups • 340 members in 44 countries • All age groups, ethnic communities, cancer types • Full members European patient groups governed by patients, for patients
  3. 3. European Cancer Patient Coalition Mission Equip, Enable, Engage & Empower our members to • actively advocate for equality in access to front line cancer care and • to engage in all aspects of cancer care, treatment and research locally, nationally and internationally “Nothing about us without us”
  4. 4. • Hospitals, surgeries designed to meet needs of people working in them, finances of governments paying for them • Healthcare policies dictated by medical profession, politicians, health industry • Health technology, medicines, research conducted by technicians, scientists alone Where is the patient? European Cancer Patient Coalition How is healthcare designed?
  5. 5. Where is the patient? • The “new” patient is online! & in online/offline communities • He searches for information about his disease, new therapies, • He discusses about his preferences with his doctors • He seeks to contact peer patients • Exchanges information The “new” patient wants to meaningfully participate in his care!
  6. 6. What does “healthcare” know about the new breed of patients? Men Elderly Women Families Ethnic groups migrants Youth Children
  7. 7. Who were the most acclaimed speakers at the Quality of Care Conf. in Chania, Crete last Friday? European Cancer Patient Coalition Margaret Murphy: Patients for Patient Safety, World Health Organization (WHO) World Alliance for Patient Safety Chair – RA Patients Association of Crete Marina Tzanakis- Chair-EFZO me ton Karkino-Cancer Patient Association Crete
  8. 8. Why did audience gathered on Saturday in Hall5.1. at ECCO in Amsterdam? European Cancer Patient Coalition
  9. 9. Patient-designed healthcare? European Cancer Patient Coalition • CML AdvocatesNetwork @cmlnet 28 Sep Adherence strongly influenced by doctor-patient relationship: well- informed patients & approachable doctors drive adherence #ECC2013 #ECCH5
  10. 10. European Cancer Patient Coalition Patient-designed healthcare?
  11. 11. European Cancer Patient Coalition Patient-designed healthcare?
  12. 12. Patient-designed healthcare? CHAORDIC: What if your data did not have to die in dusty paper files and unconnected electronic silos? What if many private institutions, non-profit organizations, research centers, government entities and individual patients decided to share data? What if we could do this over a span of years creating an ever larger data set? That data set could be accessed by the many in a timely fashion that will enable both the individual and the organization to make informed health decisions.
  13. 13. Patient-designed healthcare: the new reality • Informed Shared Medical Decision Making • Quality of Care • Patient empowerment to understand his disease, his treatment & care & to speak about his preferences • Respect of patient dignity & preferences • Patient involvement in healthcare policy planning, design of research, medicines development, evaluation of health care providers
  14. 14. Thank you for your attention! Kathi Apostolidis – Vice President ECPC/Belgium Chair –Intergroup Committee for Cancer Patient Rights Advocacy /Greece Board Member –KEFI – Cancer Patients, Doctors & Friends Association/Greece Twitter: @kgapo, @cancereu, #opnhealth YouTube: ECPCTV Facebook: European Cancer Patient Coal.ition, #opnhealth Wordpress: http://epatientgr.wordpress.com Pinterest: Kathi Apostolidis CREDITS: Art Work from Regina Holliday's Medical Advocacy Blog A place where art, medicine, social media and pop-culture collide and create a patient voice in health information technology.

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