Prostate Cancer Activism and Education

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Stephen Taylor
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1 Prostate Cancer Activism and Education A PRESENTATION AND WORKSHOP E. Michael D. ( Mike ) Scott Co-Founder and President, Prostate Cancer International

that will alter their health behaviors or improve their health status AN ALTERNATIVE DEFINITION The process by which patients and their

2 What is Patient Education? A COMMONLY USED DEFINITION* The process by which health professionals and others impart information to patients and their caregivers that will alter their health behaviors or improve their health status AN ALTERNATIVE DEFINITION The process by which patients and their caregivers learn how to make the most appropriate decisions about their health behaviors and how those decisions will help them to achieve their goals (or not). *See Patient education on Wikipedia ( education)

3 What is Patient Advocacy? A COMMONLY USED DEFINITION* Patient advocacy is an area of lay specialization in health care concerned with advocacy for patients, survivors, and carers. AN ALTERNATIVE DEFINITION Patient advocacy is a set of strategies and tactics that Involve and engage all relevant parties Are intended to achieve the goal of optimal, individualized (or individualizable), patientcentric actions Are appropriate to a specific health care decision process for specific patient type *See Patient advocacy on Wikipedia ( advocacy)

4 What is Patient Activism? DEFINITION Patient activism is a mindset leading to actions (by one or more patients and their advocates) intended to achieve one or more specific, well defined goals HISTORICAL EXAMPLES The early AIDS activism leading to development of drugs to treat HIV/AIDS The development of the Prostate Cancer Foundation (admittedly by just one very affluent and influential patient) The development and evolution of Us TOO as a national prostate cancer support group network

5 Bias and Opinion It doesn t appear in the Constitution It doesn t appear in the Bill of Rights Many of us practice it all too often, and We usually just don t recognize quite how dangerous it really is THE RIGHT TO BE WRONG The right to believe that our opinion is actually right Even when it really isn t and Even when, in all truth, we know nothing (or next to nothing) whatsoever about the topic under discussion

Bias and Opinion Bias and opinion are endemic to patient education, advocacy, and activism We all bring our sacred cows and our less than sacred perceptions to the table This not necessarily a bad

6 Bias and Opinion Bias and opinion are endemic to patient education, advocacy, and activism We all bring our sacred cows and our less than sacred perceptions to the table This not necessarily a bad thing but it does need to be understood EXAMPLE:* As physicians look to adopt decision aids in practice, they may base the choice of aid on characteristics that correlate with patient socioeconomic and educational status, personal practice style and practice setting. *From a recent study on use of patient aids in discussion of treatments for prostate cancer (Adsul P., et al. Systematic review of decision aids for newly diagnosed patients with prostate cancer making treatment decisions. J Urol. 2015: 194; ).

7 The Value of Shared Decisions Whenever it is possible We should all be speaking with one voice about shared goals and what we are willing to do to achieve them Particularly when we are speaking to/with individual patients because it is that patient s goals that are important (not ours) Also when we speak for the patient community because every patient is unique The best outcome for an individual patient is not necessarily that we cure his cancer it may be that we help him retain the highest possible quality of life for as long as possible Achieving such an outcome also requires consensus between clinician, patient, and other caregivers

8 Development of PCPC3

9 Members of PCPC3

10 And so This is a meeting of an evidence academy What can and should we be doing together (clinicians, patients, advocates, public health specialists, etc.) to Optimize the diagnosis and care of prostate cancer patients here in the Delaware Valley? Build a regional action network to achieve specific goals along the way? Measure our successes and failures (research)? Use evidence appropriately to underpin both the goals we set and the outcomes we achieve? Work beyond the individual goals of individual medical groups, centers, and practices?

Preferred Care. Policyholder user guide. A comprehensive guide with important highlights

Preferred Care. Policyholder user guide. A comprehensive guide with important highlights Preferred Care Policyholder user guide A comprehensive guide with important highlights 1 How Preferred Care works The Preferred Care programme is a proactive quality protection plan designed to safeguard