Power to the patient

Patient empowerment is defined as a process that helps people gain control over their own lives and increases their capacity to act on issues they themselves define as important. Perhaps purposefully vague, this definition from the European Patients’ Forum includes everything from patients’ understanding of their diagnosis and treatment to their ability to communicate as equals with health professionals and make shared decisions about what therapeutic approach should work best for them personally.

Many of us will remember a time when people with life-threatening illnesses – particularly cancer – weren’t even told their prognosis. Although well-meaning, this approach has long been consigned to history and nowadays, medical professionals are duty bound to share details of diagnosis, treatment and prognosis with patients – and their families if so requested.

With such easy access to health and disease information on the web, people now expect health professionals to explain tests and treatment clearly. However, being able to absorb and understand information about your illness is sometimes more than individuals can manage – especially if they are in pain. So, having a family member or friend with you to take notes is often a good idea. There is also an onus on the health professional to explain medical terms in clear language and repeat information when requested.

The European Patients’ Forum identifies five elements to patient empowerment. These are self-efficacy, self-awareness, confidence, coping skills and health literacy.

It is increasingly acknowledged that to be fully empowered as patients, certain skills need to be fostered or even taught. The European Patients’ Academy is one initiative, funded by the European Union and the pharmaceutical industry, which offers patients opportunities to learn more about clinical trials and drug development while seeking to understand their own illness better. Many of those who complete training go on to become patient advocates, reviewers of patient information leaflets and members of hospital ethics committees.

Pharmaceutical company MSD employs Sinéad Tuite as patient partnerships manager in Ireland to help patients understand and deal with their health conditions. "We work with patients organisations such as Diabetes Ireland on diabetes-screening days and Arthritis Ireland on their self-management programmes for people with chronic conditions," explains Tuite. The company also runs its own patient support programmes on managing medications. "A lot of responsibility falls on individual patients to report and manage their symptoms so it's important to provide education and information to those who need it," she adds.

The recent EU Patient Empowerment Campaign (eu-patient.eu) found that when supported appropriately, patients themselves make healthcare systems more sustainable.

“Patients who consider themselves empowered often choose to have less treatment and either not to intervene or to modify their lifestyle with their condition rather than having very invasive treatments such as surgery or expensive medications so it works for the [medical] system too,” says Robert Johnstone from the International Alliance of Patients’ Organisations at the EU Patient Empowerment Campaign launch.

Global medical technology company Medtronic actively encourages patients to be a strong voice in the healthcare system. "Patients who find their voices can be effective stewards of change-bringing medical technologies to more people, impacting on the public health system and joining the boards of pharmaceutical companies and national institutes of health," says Jacob Gayle, the president of the Medtronic Foundation and the vice-president of global philanthropy at Medtronic.

Gayle says patients must be part of every step in the advancement of healthcare for all. “Patients need to understand their health issues, access care and treatment and manage chronic conditions so that they can work, care for their children and give back to their communities,” he says.

Make a difference

The Medtronic Foundation celebrates the achievements of patients who use the “extra life” they have got with the help of medical technology to make a difference in their communities. The Medtronic Foundation’s Bakken Invitation Award invites patients using life-saving medical technology to enter a competition to receive patient-empowerment training in Hawaii each year. Named after Earl Bakken (93) the founder of the pacemaker, the award sponsors 12 people to meet Bakken while doing this four-day training. See liveongiveon.org for more details.

Vincent Browne, a volunteer with the West of Ireland Cardiac Foundation, Croí, was a Bakken Invitation honoree in 2015. “I’ve had three heart attacks. And have six stents in addition to undergoing angioplasty and triple-bypass surgery. Without the coronary stents, I wouldn’t be here today,” he says. “With Croí, I am working to make heart disease prevention and recovery viable across the west of Ireland. I have volunteered with Croí for 18 years, and I know that this has opened doors for many others to live longer, fuller lives.”

Patients who feel empowered often ask more questions and want to clearly understand aspects of their condition and treatment. They are also more willing to share details of their symptoms. And, while this often requires more attention and time from clinicians, research has found that empowered patients are more likely to manage their conditions better and follow advice and instructions given by medical professionals – which can result in better health outcomes and time-saving in the longer term.

Electronic health records also have the potential to give back time to patients and doctors for more meaningful discussions rather than checking through previous illnesses, medications and operations.

Understanding how the health services work is another important dimension of patient empowerment. For example, when patients are offered some degree of choice when scheduling their outpatients’ appointments, they are more likely to keep these appointments.

Another form of patient empowerment is to include patients in discussions about the design of hospitals and clinics. This has become standard practice in large healthcare projects and children were consulted during the design phase of the new National Children’s Hospital for the St James’s Hospital site in Dublin.

The European Patients’ Forum believes empowered patients are crucial for health systems for five reasons: they make informed choices; they have a better relationship with health professionals; they are committed to adhering to their treatment; they are willing and able to take more responsibility for their care; and they take preventative measures and seek earlier diagnosis which reduces hospitalisation and emergency visits.

The essential components of patient empowerment

Education: patients can only make informed decisions about their healthcare when they have access to all relevant information, with medical terms clearly explained.

Expertise: patients themselves self-manage their conditions every day so they have a unique expertise on their condition which needs to be acknowledged and integrated into the medical understanding of diseases and treatment.

Equality: patients need to be supported and accepted as equal partners with health professionals in the management of their condition.

Experience: individual patients can work with patient organisations to represent themselves and their experience as a collective voice.

Engagement: Patients can be – and are now – involved in the process of designing more effective healthcare systems and in research into better treatments and services.