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Patient Advocacy
The hot topic at this year's Convention amongst the volunteers was patient advocacy or rather the extension of the advocacy what we already undertake.
A patient support group such as ours has its roots in the need to offer direct support to people who suffer from a particular illness or care for those who suffer. The core if this consists of information on the illness, treatments, amelioration of symptoms and simple human to human contact. The problem is this, should the Association or any other support group go further in the area of patient advocacy and take on larger organisations in the hope of improvement? This would involve working with government at local, national and international levels to change or improve regulation, levels of funding and the management of health care with respect to ITP. It would also involve working with drug companies, research establishments and other patient advocacy groups.
As a techie, I am not in a strong position to answer these questions, so my normal response is the look around the net to see what other people are doing.
Even a brief look at this subject yields the huge size of the problem. For example, there are government sponsored organisations such as the European Observatory on Health Systems and Policies, euro.who.int/en/home/projects/observatory, that "supports and promotes evidence-based health policy-making through comprehensive and rigorous analysis of the dynamics of health care systems in Europe." The issue for patient support groups is how to influence them.
A group with which we do have contact is the World Federation of Haemophilia, www.wfh.org. We have a link with WFH because we share concerns over blood products such as IVIg. As the name suggests it is worldwide organisation. Following the "About WFH" link on their site leads to the reason they were set up. They achieve their goals in eight main ways as listed on that page, these include areas in which we already work, namely collecting statistics and training doctors but being far larger, they can take on bigger tasks. They have approximately 35 fulltime paid staff, some of whom are employed expressly to lobby government, an area in which they have been quite successful, in particular the EU Cross-Border Health Care Directive (bmj.com/content/342/bmj.d296). On the medical side, our very own advisor and convention presenter Dr. Paula Bolton-Maggs gives a great deal of her time and support to the WFH. A blog that covers the EU Cross-Border Health Care Directive, tinyurl.com/6cm6dur, a clear indicator of just how complex the problem is.
The Patients Association say on their website, patients-association.com, that they are ".. an independent charity that highlights the concerns and needs of patients. We work with Government and a broad range of individuals and organisations to develop better, and more responsive, health services.". There you have it, the crux of the hot topic at the convention, working with (or lobbying) government and other organisations. To what extent does that lobbying benefit patients?
Another aspect of the world of patient advocacy is "who is who", not to mention the complexity. The PPTA or Plasma Protein Therapeutics Association, pptaglobal.org, is "the primary advocate for the world's leading source plasma collectors and producers of plasma-based and recombinant biological therapeutics." On pptaglobal.org/member it lists the drug companies that fund the PPTA but there are also links to patient resources, pptaglobal.org/patient/advocacy.aspx. It is clear they value the role of patient support groups to the extent that they provide help in setting up and running such groups and also fund some of their work. Our association attends the PPTA annual conference and the side meetings of the PPUG and IPOPI, so learning more about such groups as the WFH. So what is the PPUG or IPOPI? PPUG is the Plasma Protein Users Group who do not appear to have a website, IPOPI is the International Patient Organisation for Primary Immunodeficiencies, ipopi.org. Complex isn't it?
Another good example of the complex inter-relationship that exists between patient groups and the drug companies is the Patient Group Toolkit from patientgrouptoolkit.org. Last on their list of topics for setting up a patient support association is "Develop government advocacy/lobbying skills". Following the "Strategic plan" link, the document starts by saying " In September 1999 the World Federation of Hemophilia (WFH) conducted its first ever training workshop for National Member Organisations (NMOs)." This is a long way from the roots of our association but is clearly an important area of work.
A central problem as always is funding. Large scale projects need large scale funding and this is generally only available from drug companies, government or sometimes the national lottery. Accepting funds from the first two brings a real problem, the degree that people will accept the independence of the accepting association.
Happy surfing
Howard