1. Innovaciones Tecnológicas para la Salud y el Bienestar Brussels, 9 th March 2015 Patient empowerment activities in the Valencia region: lessons learnt and pending homework vtraver@itaca.upv.es

2. Valencia reference site – 3 good practices Holistic health and social services at home programme Integrated Chronic Disease Management Model Electronic Health Care Record and Integrated Information Systems PATIENT EMPOWERMENT

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4. 4 Scenarios for patient empowerment Scenario 1: “The informed patient” Scenario 2: “New professional skills, knowledge and attitudes” Scenario 3: “Self-management supported by technology” Scenario 4: “Transparent quality data for patient choice”

5. Scenario 1: “The informed patient” Health literacy at all levels Creation of training material How to manage daily with your disease, including telemonitoring and case management Promotion of School of Patients (Active Patient) and disease associations Use of social media as a tool

6. Scenario 2: “New professional skills, knowledge and attitudes” Change of culture – Patient is the focus, not the disease Training to deal with new generation of patients Evangelisation activities Engagement of not medical stakeholders Links prescription Behaviour change

7. Scenario 3: “Self management supported by technology” Introduction of the patient in the health provision chain process Health Technology Assessment (meso macro level) Providing added value (just for those who need this in an intensive way) Generating evidence

8. Scenario 4: “Transparent quality data for patient choice” Data is not transparent. No public real time indicators from Hospitals or primary care centres. Patient can have access to most of his/her data but not to aggregated data Patient can choose GP, specialist and also accept/refuse treatment but they are not always aware (or not the right data for the right decision)

9. 9 In addition to that The epatient and the social networks Special issues Diario Medico Spanish translation ‘epatient book’ Spanish informal network of patient empowerment with key stakeholders Social media analysis

10. Doubts about social media and patient empowerment? Let’s destroy some myths ….

11. An analysis of the ACOR mailing list showed that erroneous content was very rare and most of the times quickly corrected by the community Esquivel, A, F. Meric-Bernstam, et al. Accuracy and self correction of information received from an internet breast cancer list: content analysis. BMJ 2006 332(7547):939-42. Only 3% US citizens can state that they or somebody known have suffered a problem derived from content or medical advice found on Internet. This rate is stable since 2006. Susannah Fox, Sidney Jones. The Social Life of Health Information. Pew Research Center’s Internet & American Life Project. URL:http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health- Information.aspx. The excess of information in Internet does not diminish confidence in the physician, but it is even increased. Hesse B, Moser R, Rutten L. Surveys of Physicians and Electronic Health Information. NEJM 2010 Mar 4;362(9):859-60.

12. 77% doctors interviewed said that the consultation is of better quality when the patient has been previously informed through Internet. Despite an obvious bias (online survey), many physicians are happy with the patient empowerment. Analysis of 9th HON Survey of Health and Medical Internet Users. Health On The Net Foundation. URL: http://www.hon.ch/Survey/Survey2005/res.html. 83% doctors trust more than what is documented in the network that their past experiences. Connecting with Physicians Online: Searching for Answers. Hall & Partners, Nov 2009. Cited and accesible Pamela Lewis Dolan. 86% Of Physicians Use Internet To Access Health Information. American Medical News. URL:http://www.ama- assn.org/amednews/2010/01/04/bisc0104.htm.

13. Lessons learnt % patients really apppreciate patient empowerment activities but there are people reluctant to be empowered (that has to be done by the medical staff, not by me) Medical staff needs to be convinced and later trained. A global strategy - evidence of RoI - material - well defined roles

14. Pending homework -Homogeneisation – Best effort service -Not clear leadership -Better roles definition among the region stakeholders -Cooperation with other regions and national authorities, creating synergies and sharing material

15. Other useful references http://www.slideshare.net/v traver/use-of-social- networks-for-innovation-in- health Whitepaper http://goo.gl/5p62CU

16. QUESTIONS for DISCUSSION Who is taking the lead in the patient empowerment strategy in your region? Public Health? Hospital? Primary Care? Patient Associations? Who is pushing the patient for an active role in his/her health management? Public Health? Hospital? Primary Care? Patient Associations? Are patient empowerment activities happening homogenously in your region? Why is happening in that way? Which are the main barriers for patient empowerment in your region? Are patient empowerment activities depending on specific technologies?