Patient Advocacy

Patient Advocacy in Health Policy, and Capacity Building

The terms Patient Advocate and Patient Advocacy have a broad range of usage and may be applied to various subcategories of individual advocates and organizations providing various levels of advocacy.

The term “Patient Advocacy” has a very broad range of usage that encompasses many types of services for patients. Patient Advocacy organizations are often non-profit and focus on one or more aspects of health care or a specific disease, including awareness campaigns, information services, patient support services, healthcare policy.

Patient Advocates are mostly not in the health care profession and may simply be a concerned citizen, supportive neighbor, friend or family that represents and supports patients to communicate, understand, remember and cope with an often confusing and fearful disease and healthcare system.

European Commission report on patient involvement in healthcare

  • What does “patient involvement” mean for doctors and patients across European Union?In May 2012, the European Commission published the results of the Qualitative Eurobarometer on patient involvement in healthcare. This study was launched in order to get a clear view on what patients and doctors think about patient involvement. In-depth interviews were held with patients and healthcare professionals in 15 EU Member States to examine opinions, challenges and opportunities.Some key findings of the report:
  • The term “patient involvement” is not clearly understood by either patients or practitioners and often means different things to different people. Many patients describe a “traditional doctor-patient relationship”, where the doctor’s opinion is considered as being beyond questioning and patients feel uncomfortable giving feedback .
  • Communication is considered very important, but both patients and practitioners describe how doctors have insufficient time to explain treatment options.
  • The main risks of patient involvement, mentioned by both patients and practitioners, are increased demands on practitioners’ time, and the possibility of patients disagreeing with doctors’ opinions. This would also have financial implications.
  • The Internet is generally felt to be the area where there has been the most significant development with almost all patients now having greater access to information about their symptoms and healthcare (as well as healthcare options). This is seen as positive by patients but is more ambivalent for some practitioners.
  • Patients in Eastern European countries are most likely to be dissatisfied with their current level of involvement in healthcare and want to be more involved. However, this response is not universal.
  • Chronically ill patients tend to have more experience in self-monitoring and often have a more tangible understanding of “patient involvement”.The full Qualitative Eurobarometer on patient involvement can be found here:
    http://ec.europa.eu/health/healthcare/docs/eurobaro_patient_involvement_2012_en.pdf

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