Healthcare Packaging reports that support is growing for increased collaboration between pharmaceutical companies and patients in research processes worldwide, according to a new report by healthcare intelligence company GBI Research. Patient perspectives are increasingly being sought by drug regulators and reimbursement authorities, who hope to better meet the needs of their customer base.
Patient Reported Outcomes (PROs)
Patient Reported Outcomes (PROs) are increasingly being seen as valuable assets to drug regulators, who recognize that patients should be brought in early in the regulatory process to help define an acceptable benefit-risk balance for particular disease areas.
The FDA and the European Medicines Agency are working to establish processes to support this, and reimbursement authorities are looking to patients to help them define truly valuable new medicines.
The EU Patient Partnership Project (PatientPartner)
The PatientPartner project promotes the role of patient organizations in the clinical trials context . It created a virtual network called the European Network of Patients Partnering in Clinical Research (ENCPR) to empower European patient organizations to interact with the other stakeholders in clinical trials.
The PatientPartner website states:
“The aim of this project was to identify the patients’ needs for partnership in the clinical trials context. Moreover, the project lead to a well-organised and sustainable communication platform and guidelines, to enable the mutual beneficial interactions between patients and clinical trial professionals. “
Barriers obstructing sucessful partnerships
In the article barriers are mentioned that obsctruct the creation of successful partnerships between patient organizations and pharmaceutical organizations. With regard to patient organizations, they are the lack of:
- Awareness of clinical research
- Organizational structure
With regard to pharmaceutical organizations, they are:
- Concerns over potential negative publicity
- Possible delays of clinical trial processes
- Loss of control when proprietary information is shared
Social media as business performance accelerators: faster, better cheaper
Within the growing support of collaboration between pharma and patients, can collaboration be supported and enriched to enable faster, better and cheaper output if social media are being deployed?
Yes, the PatientPartner project is one case that shows that. The barriers mentioned earlier can be taken away – where and as much as possible – by social media.
The virtual network ENPCR is a case that shows how such a technology and platform offers a faster, better and cheaper means to accelerate collaboration on a European level, and be a one stop shop for other stakeholders to get in touch with European patient organisations for advice on, or participation in, clinical research.
The lack of expertise and awareness of clinical research can be diminished in a cost-effective way by deploying social media to support these. Expertise can be shared easier and faster (within the preconditions). Awareness be raised by continuous involvement of stakeholders, becoming on top of mind and letting involved stakeholders be an intrinsic part and extension of the organization.
Concerns over potential negative publicity and loss of control when proprietary information is shared can be constrained by listening and engaging with people talking about it, sharing their anxieties over the matter and showing involvement.
Depending on the sources that could create possible delays of clinical trial processes, pharma organizations can investigate how social media – means of sharing, transparancy and accountability – can help take these away.
The most important is the growing support to open up processes and involving (actively or passively) stakeholders to be more market-driven.