The benefits of engaging with patient organizations
Complete shock of an unexpected diagnosis or relief finally to receive an answer to the caused of long-time, excruciating symptoms. It is an emotional time, when a patient receives a diagnosis of a life-impacting, perhaps life-threatening disease.
However, this is only the beginning of a potentially long journey. The healthcare team in charge will be able to give answers of a factual, medical nature, explain treatment options, side effects and risk ratios. The more pressing questions are likely to lie outside their experience.
What will be my restrictions like and how do I cope with them? How do I tell my children? Will I still be able work? These are only a few of the questions that are likely to be discussed with a more satisfactory outcome amongst fellow patients. They and those involved in their care have been turning to self-help and patient organisations as the number one reliable source of knowledge for a good reason: their collected real-life experience is second to none and the community they provide are an excellent support in times when patients and carers feel worried and lonely. In addition to emotional support, they have the experience to know what is relevant to the patient at different stages of the disease journey. Whether it is spa weekends for post-mastectomy patients or roadshows for women living with breast cancer, patient organisations and self-help groups have offered a safe environment and a unique forum for discussion giving perspectives and insights that relate to what the individual patient is or will be going through.
Engaging with patient organizations can add perspective
They are also powerful allies in advocating for disease awareness, access to medicines and value-added services both at a regional, national and supra-national level. Pharma companies would therefore miss a trick if they did not enter corporations with patient advocacy groups (PAGs). Their insight into the challenges of everyday life and current unmet needs, are invaluable when it comes to tailoring resources that successfully target the users’ needs both in terms of content and usability for the specific target group. Cooperations between pharma companies and PAGs will not only increase the reach of assets by interlinking of them and the partners’ websites for example, but the PAG’s endorsement will also make them an authentic, reliable source of information.
As experts in rare disease, oncology and many other indications, infill healthcare communication engage with a wide network of patient advocacy partners and medical societies. If you are starting out your patient advocacy journey or would like our perspective and input on current projects, please don’t hesitate to contact us via info@infill.com
