Building partnerships with patients is critical to improving health reform practices

DOHA, QATAR: Health professionals must harness the untapped global power of patients and engage them more in decisions about their health, an international group of experts said today.

Patient engagement will be the “blockbuster drug of the 21st century” which will help countries “shepherd resources,” said Susan Edgman-Levitan, Executive Director of the Stoeckle Center for Primary Care Innovation at Massachusetts General Hospital and Chair of the Patient Engagement Forum.

“Professionals need to get off their pedestals and patients need to get off their knees,” she told the audience.

Across the world health care costs are rising faster than countries’ ability to meet them. In a report at the World Innovation Summit for Health, the experts argue that the answer to the crisis is not going to come from doing more of the same. Instead, a fundamental shift towards harnessing the energy of patients and the public who care about improving their own health could be the solution to some of the most pressing problems in health care.

With the growth of electronic communication, the internet and social media, patients are increasingly making their voice heard. In England, a scheme to enable patients to rate hospitals and clinics launched last July has been used by a million people in less than six months. “It is an amazing start for what I believe will become a social movement,” said Tim Kelsey, director of Information for NHS England, and a member of the panel.

The Patient Engagement report emphasizes the need for professional training to improve teamwork and communication skills and establish meaningful, direct partnerships between individual practitioners and their patients. This would help patients to engage and make informed decisions about their own healthcare. The Forum considered all aspects of patient empowerment, including health literacy, chronic disease, self-management, and the role of technology.

Dr Hanan Al-Kuwari, managing director of Hamad Medical Corporation, Qatar, said Qatar was fortunate in having a literate population. “This gives us a wonderful opportunity to lead in this area. No organization has reached a level of being truly patient centred. It requires a better educated staff and public.”

Dr Mariam Matar chair of the UAE Genetic Diseases Association, described how she had persuaded members of a group with a high incidence of genetic disease to agree to screening by drawing a comparison with varieties of date identified by their seeds. “This tribe had resisted screening for three years. That evening the leader agreed.”

A member of the audience questioned whether clinicians had time to engage with patients, even if they were sympathetic to the cause.

Professor Dermot Kelleher, Dean of the Faculty of Medicine at Imperial College, London, said communication was fundamental to healthcare and could not be ignored. “Our relationship [with patients] depends on communication.”

Time could be saved by ensuring patients were seen by the appropriate member of the health team to ensure they only talk about what they need to.

Dr Hannan said: “When we redesigned our out-patients we created more time for one to one consultations.”

A second questioner suggested “citizen engagement” was a better term than “patient engagement” – to help citizens avoid becoming patients. “We need to look at people as healthy citizens, not patients,” Dr Hanan said.

Patient Engagement is one of eight areas being discussed at the Summit taking place in Doha, Qatar on 10 and 11 December, where world leading experts will join an influential cast of heads of state, government ministers, academics, clinicians, policy makers and business leaders to discuss innovative solutions to some of the most pressing global health challenges. As well as Patient Engagement, there will be reports on Accountable Care, Big Data and Healthcare, End of Life Care, Mental Health, Obesity, Antimicrobial Resistance and Road Traffic Injuries.

The Right Honourable Professor the Lord Darzi of Denham, Executive Chair of WISH and Director of the Institute of Global Health Innovation at Imperial College London, said: “There are powerful benefits to be derived from partnering with patients, families, and communities. Partnership is key to engaging and motivating all parties involved in developing policies and programs that determine sustainable health practices.”

WISH opened today in Doha and is under the patronage of Her Highness Sheikha Moza bint Nasser, Chairperson of Qatar Foundation for Education, Science and Community Development. WISH supports the aims and ambitions of Qatar Foundation and reinforces Qatar’s pioneering role as an emerging center for medical innovation.

ENDS

Notes to editors:

1. Patient Engagement Report Summary

The aim of this report is to stimulate both dialogue and action and it accordingly identifies a series of immediate next steps for improving engagement. They are:

1. 1. Sign the Declaration on Engagement for Global Health to demonstrate support for engagement at all levels of the Global Health Partnership Framework and to commit to taking action to address one of the priority recommendations.
   2. Sponsor a Health Engagement Day in conjunction with community partners, to begin engaging patients, families, and communities in health.
   3. Participate in international Change Day on March 3, 2014, by inviting patients, families, communities, and healthcare workers to make personal commitments to engagement.

Examples of case studies

This report is structured around a Global Health Partnership framework which has been developed specifically for WISH and includes education of the public and health professionals, research, community health, direct care, organizational design and governance, and public policy. Case studies have been identified in each of the areas. A selection is highlighted below:

1. • Education: Patient and Family Education: National Breast Cancer Coalition (NBCC) Project LEAD.
   • Research: The Patient-Centered Outcomes Research Institute (PCORI).
   • Community Health: Danish Society for Patient Safety.
   • Direct Care: The Massachusetts General Hospital Shared Decision Making Program in Primary and Specialty Care.
   • Organizational Design and Governance: Children’s Hospital of Philadelphia (CHOP) Family Centered Care (FCC) Program.
   • Public Policy: International Alliance of Patients’ Organizations Patient Solidarity Day.

Recommendations for policy-makers

Recommendations in each area have been identified that will enable policy-makers to further engagement. These include:

1. • Develop and implement programs to improve the health literacy of the population, including enhancing primary and secondary education curricula to incorporate content related to physical and mental wellbeing, health literacy, statistical and risk literacy, selfcare, and skills to enhance partnering with healthcare professionals.
   • Offer evidence-based sources of health information and decision support tools to people through effective dissemination strategies such as electronic portals, mobile phones, and alternative low-tech tools (paper-based, for instance).
   • Set public expectations that every healthcare professional will routinely invite them to participate in informed decision-making, and will partner with patients and families to support their goals, as they define them.
   • Engage patients and family members in developing and reviewing all communication and educational materials designed for patients and families, to ensure that they are relevant and clear
   • Directly engage the public in policy-making, using methods such as in-person consultation and placement on decision-making boards, and through the use of emerging methods such as social media and crowdsourcing.
   • Require research funding entities to set the expectation that patients and families will be involved in all aspects of research activities they fund, including establishing study aims, design and methodology, and outcome measures.

Susan Edgman-Levitan is the Executive Director, Stoeckle Center for Primary Care Innovation, Massachusetts General Hospital.

A constant advocate of understanding the patient’s perspective on healthcare, Susahas been the co-principal investigator on the Harvard Consumer Assessment of Healthcare Providers and Systems Study (CAHPS) from 1995 to the present. Susan serves on several boards and national advisory committees, including the Foundation for Informed Medical Decision Making, the National Patient Safety Foundation, the National Health Services Corps Advisory Council, the Patient-Centered Primary Care Collaborative, and is a member of the Lucian Leape Institute. She is a graduate of the University of Michigan and the Duke University Physician Assistant program where she received the Distinguished Alumni award and was inducted into the Duke University Medical Center Hall of Fame in 2004. In 2007 Susan was awarded the Leadership and Innovation award from the Center for Information Therapy.

1. About WISH

The inaugural World Innovation Summit for Health (WISH), due to be held in Doha, Qatar on 10-11 December 2013, will bring together heads of state, ministers, senior government officials, academics and thinkers, as well as the most influential business leaders, to stimulate implementation of practical, sustainable and innovative solutions to tackle global health challenges.

The purpose of WISH is to encourage collaboration and innovation in health policy, health systems and health care delivery, in order to close the gap between what we know and what we do in the fields of healthcare and medicine.

WISH is aligned with the mission and vision of Qatar Foundation and Qatar National Vision 2030, and serves to highlight Qatar’s growing role as an emerging center for healthcare innovation. As the nation stands at the forefront of healthcare reform, Qatar Foundation has embarked upon several promising research-health initiatives, including partnerships with Weill-Cornell Medical College, Biobank Qatar, Qatar Robotic Surgery Centre Qatar Cardiovascular Research Centre, Virgin Health Bank, and Sidra Medical and Research Center.

For more information on WISH, please visit: http://www.wish-qatar.org/

1. Qatar Foundation – Unlocking Human Potential

Qatar Foundation for Education, Science and Community Development is a private, non-profit organisation that is supporting Qatar on its journey from carbon economy to knowledge economy by unlocking human potential for the benefit of not only Qatar, but the world. Founded in 1995 by the Father Emir, His Highness Sheikh Hamad Bin Khalifa Al Thani, Amir of Qatar, QF is chaired by Her Highness Sheikha Moza bint Nasser.

QF carries out its mission through three strategic pillars: education, science and research, and community development. QF’s education pillar brings world-class universities to Qatar to help create an education sector in which young people can develop the attitudes and skills required for a knowledge economy. Meanwhile, its science and research pillar builds Qatar’s innovation and technology capacity by developing and commercialising solutions through key sciences. Finally, its community development pillar helps foster a progressive society while also enhancing cultural life, protecting Qatar’s heritage and addressing immediate social needs in the community.

For a complete list of QF’s initiatives and projects, visit http://www.qf.org.qa

For more information about Qatar Foundation please contact our press office at: pressoffice@qf.org.qa