PHA Europe is committed to working together with its members to support patients in receiving the most appropriate care for them. Building on the important findings from the International Patient and Carer Survey, we have developed this page to host a range of simple and easy-to-use materials to support you in communicating the results of the survey to your members locally and organizing local level initiatives to encourage use of the existing patient and carer dialogue tools.
Member Guide for PAH members
This guide has been developed as an introduction to the types of activity that patient groups can organize to raise awareness of the International Patient and Carer Survey findings and the patient and carer dialogue tools.
For more information about the activities outlined in this guide, including a detailed step-by-step guide for each and template materials for you to adapt as you need, please click on the individual headings of the activities below.
How-to guides to practical activities
Media launch »
The IPCS results and the launch of the dialogue tools are excellent news hooks and could be launched to the media in your country, if this has not already taken place.
Media one to ones »
Target key journalists with the offer of individual briefings with medical experts, patients and carers. This can be an excellent means of building strong relationships with these journalists and can also result in more in-depth feature coverage rather than shorter news items.
Stakeholder mapping »
Stakeholder mapping consists of carrying out research to determine which stakeholders could be most valuable to you in terms of achieving your objectives, allowing you to focus your efforts and achieve maximum results.
Patient and carer conference »
Use the IPCS findings and the launch of the dialogue tools as the basis for a patient and carer conference in your country. The format could vary from a small, informal gathering to a larger, more sophisticated event with a panel of speakers and a range of workshops.
Optimizing meeting attendance »
Attending national meetings or conferences as a patient organization can be costly and time-intensive and so it is important to ensure you make the most out of it. The key is to publicize your attendance as widely as possible and to offer features that will attract the maximum audience to your stand.
Making use of related events »
Whether you are attending a conference as a delegate or representing your organization as a guest at a press briefing for another organization, there will be opportunities for networking. You should make use of every opportunity to spread the word about your organization and about PAH.
Roundtable meeting »
Roundtable meetings bring together a group of medical professionals (and sometimes other stakeholders) with an interest in a particular topic or issue. Such an event will usually have a clearly defined objective, such as developing a strategy for improving diagnosis, producing a report for publication in a key journal, or developing a consensus statement or set of guidelines.
A webcast is a way of streaming or broadcasting an interview or presentation over the internet. It can be transmitted live, in which case the audience is alerted in advance to the forthcoming event, and can even interact with the presenter. Alternatively, it can be made available ‘on demand’ so that it can be accessed whenever required.
Lobbying for better care for patients with PAH »
Where service provision is currently inadequate there is a need to lobby to help provide a more comprehensive standard of care for all PAH patients and their carers.
Direct emails to membership »
Sending out regular email updates to members can help to engage your membership and build an on-going dialogue. Emails can draw attention to news items or media coverage or invite members to participate in media activity or to share their views.
Best practice case studies
Learn more about PHA Norway’s Annual Patient and Carer Conference
Learn more about BSPPH’s Roundtable event and Press Conference
Learn more about HTAPFrance’s Patient Congress and Healthcare Professionals Workshop
Learn more about HPH’s distribution of the Dialogue Tools and Press Conference
Holistic care in PAH: recommendations from multi-stakeholder meetings
In April 2015, Actelion organized a meeting of international experts in PAH, to discuss how patient care could be improved to address the wider needs of patients. The group, which included specialist PH physicians, nurses and representatives from patient associations, examined the current roles of the multidisciplinary healthcare team and patient associations, and explored the information and communication needs of all stakeholders involved in the care pathway.
The group identified a number of opportunities or ‘gaps’ ininformation and communication that could be addressed to improve the holistic care of patients. This report summarizes key insights from the group’s discussions, referencing these to the available literature, and presents a number of recommendations for action put forward by the group during and after the meeting.