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Literacy is a luxury that many of us take for granted. That is why SADAG created SPEAKING BOOKS and revolutionized the way healthcare information is delivered to low literacy communities.

The customizable 16-page book, read by local celebrity audio recordings, ensures that vital health and social messages can be seen, heard, read and understood by everyone across the world.

We started with books on Teen Suicide prevention , HIV, AIDS and Depression, Understanding Mental Health and have developed over 100+ titles, such as TB, Malaria, Polio, Vaccines for over 45 countries.

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Patient advocacy groups are gaining influence and playing an increasing important role in our healthcare system, according to Keith Allan, head of global advocacy at Novartis. Allan told attendees at eyeforphara’s recent Patient Compliance and Communication Europe 2008 conference that PAGs are become an integral “part of the top-down delivery and management of care” and simply can’t be ignored when it comes to patient compliance programs.
In the three decades that he’s worked in this area, Allan says PAGs have moved from simply playing a role in patient support to educating and disseminating information, as well as being active in the political and regulatory arena.
“Patient advocacy groups are now part of the decision-making process,” says Allan. “Regulatory approval and guidelines, reimbursement and health policy all recognize and incorporate the voice of the patient.”
More groups, he says, are involved with pharma clinical programs and PAGs are even partnering the World Health Organization and the United Nations, vastly increasing their capabilities, credibility and power.
“PAGs are now one of the key drivers of the healthcare agenda,” Allan says. “PAGs are here to stay and their influence is becoming stronger.”
Gaining influence
One of the biggest challenges in involving PAGs more in patient compliance programs is doing so within the legal and regulatory framework, he says. But giving patients ways to improve how they take their medicines and better understand their conditions are their top requests, he says.
Patient groups, which are composed of patients, family members and other caregivers, range from global alliances and coalitions to regional and national groups, Allan says. And they have influence over policy makers and government, professional societies, medical meetings, clinicians and researchers, the media and their own members.
In particular, getting PAGs to speak on pharma’s behalf in the media is a particularly powerful way of getting a message out, says Allan.
In Europe, patient groups are serving on expert panels that develop regulatory applications and guidelines and working with agencies like the UK’s NICE in its evaluation processes and are consulted on key healthcare policies by many prominent European Union institutions, he says.
In the US, however, patient groups’ roles are less formal and transparent. Still, PAGs have established an open dialog with government, the FDA, NIH and health insurers, he says.
“They are still recognized as a group that can influence policy and the FDA, but they don’t have the same recognition or seat at the table that they do in Europe,” Allan says.
Patients also have an evolving role in clinical research, Allan points out. In Europe, EPOISA advocates patient involvement at all stages of research, he says, and some disease areas, such as HIV/AIDS consult patient groups at all stages.
There is, Allan says, a “clear call for patient-centered healthcare.”
“They see themselves as the guardians of market access and think they should be driving it,” he says. “But policy makers see PAGs as valuable for their ability to advocate for patients rights and access to treatment.”
Facilitating successful alliances
The media and policy makers see gaps in the groups’ skills an capacity, including a lack of consistency and focus, a need for greater professionalism and political skills, better balance between emotional and fact-based campaigning, priorities aligned with public need.
“While PAGs strive to influence access to healthcare, their credibility and capabilities are often not well perceived by decision and policy makers,” Allan says.
But because their influence and impact is quickly growing, the pharma industry should facilitate successful alliances with PAGs to improve access and deliver, Allen says. There are, he says, common goals and shared agendas that all come back to getting the right treatment to patients.
Pharma companies, however, must apply equity/fairness, maintenance of independence, transparency, respect, mutual benefit and integrity to its interactions with patient groups.
Allan suggests that pharmas:
• Comply with self-regulatory codes
• Develop relationships based on mutual values and respect
• Clearly define expectations
• Choose company rep with care
• Understand PAGs leadership has varying levels of sophistication and influence
• Start small and let relationships evolve
• Remember to give more than money
• Be transparent about partnerships
• Be prepared to be part of funding consortium
But he warns that pharmas should not:
• Promote products - inform and educate instead
• Assume PAGs understand medical language
• Let advertising or public relations agencies establish relationships with PAGs for them
• Make decisions in a vacuum
• Expect financial support to mean dictating to the group
• Think they need to sponsor every group
Legal restrictions on providing information are a real challenge when with working with PAGs, Allen stresses, but a sustainable partnership based on a shared vision, mutual respect and trust anchored in integrity and ethical compliance can be a dynamic way of providing information to patients that will increase compliance, he says.


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