Patients’ voices amplify the heart of healthcare

Subjects, service users, clients, participants. All these words describe the person at the heart of healthcare: the patient. While health services, researchers and pharmaceutical companies all have that one person in common, the person we are told is at the heart of everything they do, the patient voice is frequently absent from the decision-making processes that affect them.

Pharmaceutical trials are generally designed and reported in a manner that focuses on statistics and data, as opposed to on patients’ thoughts and opinions. The same applies to healthcare research projects, and medical conferences. Healthcare services and strategies are often designed and delivered in a way that seems to suit those who deliver them more than those who receive the care. And so patients are reduced to mere passive consumers, when their knowledge, views and experiences should be key to any process or treatment that directly involves them.

However, things are changing and there is now more happening to ensure the patient’s voice is heard at all stages of healthcare delivery and research.

The beginnings of this revolution are happening in Ireland with the emergence of a more engaged patient empowered by the internet and new digital health technologies, according to social media “epatient” expert Marie Ennis O’Connor.

“We are starting to see a transformation of the prevailing culture, which still assumes that doctor knows best, and a recognition that health expertise lies outside as much as inside medical circles. We must engage people in meaningful dialogue about their healthcare needs and encourage their equal participation in the design of their care,” says Ennis O’Connor, a spokeswoman for Europa Donna Ireland, the Irish Breast Cancer Campaign.

A recent patient-focused conference, hosted by the Irish Pharmaceutical Healthcare Association (IPHA) and supported by the Irish Platform for Patient Organisations, Science and Industry (Ipposi), explored how the voice of patients can be better heard by the research-based pharmaceutical industry.

Oliver O’Connor, the chief executive of IPHA, outlined how relationships between the pharmaceutical industry and patient organisations are vital for the development of breakthrough medicines. He maintained there was great scope for enhanced co-operation, particularly in areas such as real-world evaluation of medicines.

Patient network

To this end, the conference heard from Dr Gabriel Eichler from the US-based organisation PatientsLikeMe, the largest and most active online patient network. The site, patientslikeme.com, has 350,000 members who report on their real-world experiences of more than 2,500 conditions. About 1,500 Irish patients use the site, Eichler told

The Irish Times

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Through the website, patients can connect with others who have the same disease or condition, and track and share their own experiences. In the process, they generate data, using validated measures, about the real-world nature of disease and treatments that help researchers, pharmaceutical companies, and healthcare regulators and providers develop more effective products, services and care.

PatientsLikeMe recently signed a research collaboration agreement with the US Food and Drug Administration (FDA) to determine how patient-reported data can give new insights into drug safety.

The rigid patient-selection process, the limited numbers involved, and the overall nature of clinical trials make it impossible to anticipate all the potential side effects of drugs in the real world, whereas patient-generated data gives a more complete picture by providing a window into patients’ lives and healthcare experiences over time. This makes patients real collaborators as opposed to mere participants, Eichler explained.

“When people from industry come to PatientsLikeMe, we have to re-teach them to think about patients as people because so much of the industry is not about people, it is about molecules or drugs or dollar signs or regulations and trials and subjects, etc. We talk about patients as people, and people living with disease; not diabetes patients, but patients living with diabetes. This change in vernacular is very important in accentuating that these are real people with the plights of disease that they manage,” Eichler said.

The conference also heard from Dr Graham Love, the chief executive of the Health Research Board (HRB), who outlined the HRB's new framework for public and patient involvement in its funded health research projects.

While direct patient involvement has previously been lacking, its new approach will represent an “active partnership” between members of the public and researchers in the research process, Love said. This can include, for example, involvement in the choice of research topics, assisting in the design, advising on the research project or in carrying out the research.

Broader principles

In addition to improving the relevance and quality of healthcare research, increased patient involvement ensures that research is influenced by broader principles of citizenship, accountability and transparency, Love said. It would also hopefully help increase the implementation of successful research projects, he said.

Ennis O’Connor agrees that when it comes to research, it is important that patients frame the research question as “historically, researchers have framed questions which are not particularly relevant to patients”.

Also speaking at the conference, Dr Philip Crowley, the HSE national director of quality improvement, maintained the voice of patients is absolutely essential in the development of appropriate and effective healthcare services. He warned against traditional paternalistic attitudes to patients and, more recently, tokenism where patients are “invited to the table but not actually listened to”.

Crowley said while aggregate data has a role in improving healthcare delivery, local individual feedback and data is also essential. The HSE is now going about involving patients more directly in the care they receive, though a national patient forum, various listening exercises, and involvement in service and strategy design, he said.

Crowley acknowledged it “will take time to change things” in the health service, but said a key part of assessing the healthcare experience for patients in future will be asking whether they felt listened to.

The Department of Health is taking a similar approach to increasing patient consultation and involvement in its work: the new National Maternity Strategy includes two patient representatives, and the department is reaching out more to patients, as opposed to "healthcare stakeholders", in its consultation processes for new legislation and strategies, for example, the new National Cancer Strategy.

In addition, the Medical Council, the regulatory body for doctors in Ireland, which traditionally had a medical majority, now has a lay majority and members include patient advocates.

The conference also heard from a number of patients’ organisations, which provide a vital voice and source of empowerment for patients, advocating on their behalf for better services, disease awareness and research and medicines, which is particularly relevant for rare diseases.

Ava Battles, chief executive of MS Ireland, noted that patients rarely seem to get asked their opinion on the medicines they are prescribed despite the very valuable input they have, while Avril Daly, chief executive of Fighting Blindness, highlighted how this once-small support organisation had grown into a global leader in the search for cures and treatments for genetically inherited and age-related forms of blindness; a real example of patient power.

Rare disease

A separate conference about the rare, incurable disease Duchenne muscular dystrophy (DMD) was held in Croke Park in June, hosted by the Join Our Boys Trust. The trust was established by Paula and Padraic Naughton to help raise awareness of DMD, which afflicts all three of their sons, Archie, George and Isaac.

Some of the foremost medical and scientific experts on DMD in Europe spoke at the conference and gave updates on promising research on the disease. However, unlike most medical conferences, which usually focus exclusively on the disease and research/medical data, this conference heard directly about the real-life experience of DMD patients and their carers, and how their quality of life is as important as their medical treatment.

“Patients are the most underutilised resource in healthcare. While doctors are experts in the disease, patients are experts in how the disease affects their lives. Learn from them,” Ennis O’Connor concluded.

Patient power: Ireland's advocacy organisations Ipposi Ipposi is a patient-led organisation that works with patients, Government, industry, science and academia to put patients at the heart of policy and medicines. To that end, it holds meetings, round-table discussion groups and training days that promote this objective, whether it is in the area of rare diseases, clinical trials, health technology assessment, innovation, health information, connected health, or any other relevant topic that will promote patient understanding and involvement in the treatment and decision-making processes that affect them in Ireland. See ipposi.ie

GRDO The Genetic and Rare Disorders Organisation (GRDO) is a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare disorders. GRDO’s mission is to provide a strong voice for these groups in order to achieve better support and services. It also acts as a watchdog in relation to legislation concerning disability to ensure that the rights of people with genetic or other rare conditions are protected. See grdo.ie

Patient Focus Patient Focus is one of Ireland's leading national patient advocacy organisations. The group provides a point of contact, advocacy and other supports to patients who have suffered adverse events within the healthcare system. It also aims to ensure the preservation and enhancement of patient rights in all healthcare settings. See patientfocus.ie