Guide to Patient Advocacy in 10 steps
A very useful and systematic guide by the European Society of Gynecology's patient advocacy network ENGAGe published in Oct 2013. It describes a 10 step process of preparing an advocacy strategy, including defining aims and objectives, understanding your audience, developing key messages, developing the strategy, choosing the tools, developing the action plan, engaging with third parties, budgeting and measuring success.
Work in continuous progress with the aim to become a collaborative community resource for Patient advocacy.
Your contribution is welcome here!
The open Access button-
Ever been frustrated with not being able to read that specific scientific paper with the latest Melanoma news?
The OPEN ACCESS BUTTON is an amazing tool developed by two students that gives you access to these papers- see below for how it works and under https://www.openaccessbutton.org. Amazing!
To obtain an article, follow the steps below- also see website
- Visit the JCO website.
- Browse the table of contents or search for topics of interest. When you find an article you’d like access to, click on the PDF version, then click the link entitled patientACCESS on the bottom of the screen.
- The link will take you to the RightsLink website. You will be asked to enter your email address and password or set up an account if you do not already have one. This is a quick, three step process.
- You will be asked to review and accept the Terms and Conditions.
- You will receive an email confirmation message from Copyright Clearance Center thatRightsLink has received your order.
- You will receive the requested article through email within 24 hours as a PDF attachment
ACCESS to medical information
Timely and accurate information about Melanoma, the science behind it and the latest therapeutical developments are crucial for meaningful advocacy.
Often, science-reporting articles in the news are written to be catchy- turning the most speculative parts of the research paper into headlines- so it is always worth to check the original!
There are many great ADvocacy sources already out there-
so no need to re-invent the wheel
Melanoma advocacy is about improving the situation in Melanoma.
The fastest way to progress means
- to define the problem as precisely as possible- one cannot fix a problem one doesn't know inside-out.
- to systematically investigate what has already been done by others- in Melanoma, in a different cancer, a different disease or an entirely unrelated field? In your country or somewhere else? Don't forget national or european agencies and research institutions- they can have a wealth of information.
- to connect with others- if it is an important problem, surely someone somewhere will have valuable insights. You will be surprised how friendly and helpful most people are when you reach out to them- most are very willing to help! It helps to be very precise about your question and to be able to state why you think they are the right person to help you, e.g. because you've read about them, went to their talk or watched their video on youtube.
- to find like-minded advocates- use our network to see who's willing to join you.
- to adapt existing knowledge and resources to have the time and energy to focus on the gaps that aren't covered so far- to where it will make a real difference.
- to share your ideas and insights- so that they have the impact they truly deserve.
Surviving Melanoma in Europe.
Access to prevention, early detection and effective treatment for all.
Melanoma Patient Network Europe
The American Society of Clinical Oncology (ASCO) and the Conquer Cancer Foundation provide patients being treated for cancer and their caregivers with free access to medical research articles published in ASCO’s Journal of Clinical Oncology (JCO).
PatientACCESS is an initiative between six publishers: ASCO, the American Association for Cancer Research (AACR), Elsevier, SAGE, Wiley and Wolters Kluwer Health, as well as the Copyright Clearance Center (CCC).
Details about access on the right, please also visit the website.