Shifting Perspectives in Healthcare: Becoming Partners with Patients

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This was a joint workshop between WONCA Europe and the Vasco da Gama Movement and was held in the WONCA World Conference 2013 in Prague.

Background
The Internet-savvy users, the so called e-patients, seek online health information, connect and collaborate with others and take advantage of this medium not only for decision making and management of their own condition, but also for education and advocacy purposes. The connectivity and the wide availability of a large amount of data, thanks to worldwide health databases, mobile devices and personal health records, enable the patients to play an active role in healthcare at an individual and community level, as shown by the connected communities of care and the movement of participatory medicine.
Relationships between clinicians and patients are bound to be transformed fundamentally. In this context, it is crucial now, more than ever, that Family Doctors become partners with patients and lead the way into a new paradigm of Medicine.
Aim
The aim of this interactive workshop is to present this ever evolving scene and explore the ways with which Primary Care and Family Medicine can stay relevant.
Expected Results
This workshop will try to show that the Internet is not a grocery shop, but a vast field with four corners: the corner of what is known (evidence), the corner of what we feel (gut feeling), the corner of what we think (fantasy, perception) and the corner of what we want (dreams, hope).
We expect that by the end of the workshop we will have discussed some of the characteristics of the e-patient communities and outlined some strategies for the cooperation with this new generation of empowered patients.

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  • 1. Patients are increasingly interested in sharing their experiences and learning about their conditions.2.The Internet-savvy users, the so called e-patients, seek online health information, connect and collaborate with the others and take advantage of this medium not only for decision making and management of their own condition, but also for education and advocacy purposes.In fact, the advances in connectivity and the wide availability of data are shifting healthcare towards real patient-centeredness, and even in more rigorously scientific areas, such as research, the Patient and Public Involvement (PPI) is bound to cause a wave of transformations.
  • 1. Rita Lidia Stara is a mother of three children, two of whom have been diagnosed with Type 1 Diabetes Mellitus.2. She has built upon this personal experience and has focused on improving the quality of life of the diabetic patients and their caregivers by launching and promoting public campaigns to raise awareness of the disease.
  • Shifting Perspectives in Healthcare: Becoming Partners with Patients

    1. 1. SHIFTING PERSPECTIVES IN HEALTHCARE Becoming Partners with Patients Carl Steylaerts @lygidakis @rqgb @gregjirving image by @rqgb
    2. 2. Patients are increasingly interested in sharing their experiences and learning about their conditions. The e-patients seek online health information, connect and collaborate with the others and take advantage of this medium not only for decision making and management of their own condition, but also for education and advocacy.
    3. 3. e-Patients are equipped engaged empowered enabled “ ”Tom Ferguson
    4. 4. A cooperative model of health care that encourages and expects active involvement by all connected parties as integral to the full continuum of care.
    5. 5. Patient engagement involves a shift in perspective, rights, and responsibilities. Rich conversations await us as patients and providers alike shift away from the paternalistic past and toward the shared responsibilities of participatory medicine.
    6. 6. Rita Lidia Stara is a mother of three children, two of whom have been diagnosed withType 1 Diabetes Mellitus. She focused on improving the quality of life of the diabetics by launching and promoting public campaigns to raise awareness of the disease. Chair of Federazione Diabete Emilia Romagna and chair of the Italian Diabete Forum.
    7. 7. Marie Ennis O’Connor was diagnosed with breast cancer at the age of 34. In her search to make sense of the experience of cancer and integrate it into her life, she started blogging in the Journeying Beyond Breast Cancer, because she found it hard to access information on how to deal with the post-treatment limbo.
    8. 8. Co-founder of #BCCEU, Europe's first breast cancer social media chat and participates in the Health 2.0 network.
    9. 9. Which are your expectations as an (e-)patient? For my doctor to provide me with all the information I need to make an informed decision and to be prepared to work in partnership to achieve the best health outcomes suitable for me. “ ”
    10. 10. How do you see the role of Family Doctors in such a system? Family doctors play a key role in determining to what extend the patient’s level of engagement grows - or not. Patients want to trust that their family doctor knows them as an individual and will offer advice and treatment suitable to their individual needs, taking into account family and personal circumstances. “
    11. 11. Stephen Heywood was diagnosed with ALS in 1998 at the age of 29.
    12. 12. Stephen's family made many attempts to slow his disease and treat his symptoms, but the trial-and-error approach was time- consuming and repetitive. They wonder - “Is what I’m experiencing is normal?” or “Is there is anyone out there like me?” They believed there had to be a better way.
    13. 13. Inspired by the life experiences of Stephen Heywood, PatientsLikeMe was founded in 2004 by his brothers Jamie and Ben Heywood and long-time family friend Jeff Cole. On PatientsLikeMe’s network, people connect with others who have the same disease or condition and track and share their own experiences.
    14. 14. Dave deBronkart e-patient Dave TEDx MaastrichtTalk
    15. 15. this is a road to a danger zone - identify and suggest ways to overcome the dangers this is a road to better health - explain why and how this is a road to unknown territory, we need to be educated - how to do that? this is a road against the healthcare silos, to the borders of tailor-made medicine, politics, insurance companies, patients and family doctors - how can we interact with each other?

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