Public Patient Involvement

Public Patient Involvement

Patient and public involvement – commonly shortened to PPI – is a framework to give lay people an effective and active role in all forms of “healthcare research”.

When using the term ‘patient and public’ we include potential patients, carers and people who use healthcare services as well as people from organisations that represent people who use these services. Whilst all of us are actual, former or indeed potential users of healthcare services, there is an important distinction to be made between the perspectives of the patient/public and the perspectives of people who have a professional role in healthcare, be they clinicians, researchers, regulators, payers or policy makers.

The cornerstone of PPI is that research is being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. Having patients and the public involved as partners in research should lead to the development of treatments and services that better meet people’s needs and are more likely to be put into practice.

In this context, Retina International believe that PPI should be a cornerstone of all innovative programs in the retinal space. We recommend that “healthcare” is defined as widely as possible, to include medical care, public health, and social care, and “research” covers all stage of the product/service development lifecycle, including basic science, pre-clinical and clinical development, regulatory and reimbursement processes and service delivery.

The purpose of PPI must be to align research more closely with the public’s needs and thus make it less likely to fail, more effective, and more cost-effective.

Today patients and the public already take part in research, but usually as participants in a study, where researchers collect data about them and their health. PPI should create an active partnership between the patient/public and researchers, with the voice of the patient/public contributing throughout the research process.

PPI occurs when the patient/public work in partnership with researchers in setting priorities for research, in planning and managing research studies, as well as in summarizing, distributing, sharing, and putting results into practice.

PPI is an important step in ensuring that the real life experiences of patient/public are considered when decisions are being made about what research to do, what are the most important questions to be answered, how to design studies that patients are more likely to both take part in studies and stay involved in, what constitutes a good outcome, what clinical endpoints are relevant and what value should be placed on a particular treatment or service.

Measuring “value” is a particularly contentious issue where one may be talking about gradual deterioration and/or loss of vision over decades and the burden of all of the associated implications of vision loss. As these costs are typically not borne by public healthcare systems, quite often they are ignored in any economic cost-effectiveness analysis.

What is Patient Empowerment?

We hear the term ‘Empowered Patient’ the ‘Patient Advocate’ the ‘Involved Patient’ a lot these days. Here at Retina International (RI) a key objective is to educate our patients on emerging policies that may affect their health care in the future. Regardless of where we live in the world inequalities in access to diagnosis, care and treatment are a reality. By working together to think internationally and act nationally we can draw on each other’s experiences so that as individuals and as a collective we can work towards better outcomes for people living with retinal dystrophies be they genetically inherited or age-related.

We are all advocates for our future healthcare, as are the clinicians, allied health professionals and scientists who work with us at RI.
If you are new to the area of health advocacy and patient empowerment here are some explanations that we hope will define the terminology used.
We want to hear from you so if you have any questions let us know.
Many researchers place a high value on PPI. Hear what Prof Joseph Carroll of University of Milwaukee Eye Institute, USA thinks about PPI in research.

Recently, the EMPATHIE project (“Empowering Patients in the Management of Chronic Diseases”) developed a working definition of an empowered patient. This definition in fact combines both empowerment and involvement:

“An empowered patient has control over the management of their condition in daily life. They take action to improve the quality of their life and have the necessary knowledge, skills, attitudes and self-awareness to adjust their behaviour and to work in partnership with others where necessary, to achieve optimal wellbeing. Empowerment interventions aim to equip patients with the capacity to participate in decisions related to their condition to the extent that they wish to do so to become “co-managers” of their condition in partnership with health professionals; and to develop self-confidence, self-esteem and coping skills to manage the physical, emotional and social impacts of illness in everyday life.”

However, this definition focuses only on the individual patient and its scope is limited to managing life with a chronic condition, even though it does go beyond the purely medical context. It does not include the notion of “critical awareness” and patients’ active participation with the aim of changing the system. But it also does not address the role of patient organisations as representatives of the patient community in a wider sense whose role is to advocate for the patient perspective at policy level.

The Alma Ata declaration defined civic involvement in healthcare as both a right and a duty: The people have the right and duty to participate individually and collectively in the planning and implementation of their healthcare.” (Alma Ata Declaration Principle IV1978, WHO). “Meaningful patient involvement” as part of a global patient movement, RI along with other umbrella groups belive it is based on the premise that patients have a specific expertise derived from simply being patients, which is a valuable source of experienced knowledge. The patient’s perspective is not the same as the lay/consumer perspective. The patient’s knowledge is derived from living with a condition day to day and from being in frequent contact with the healthcare system.

PPI & Health Literacy

In addition to being a right, patient involvement is recognised as having benefits for developing therapies and healthcare services in a way that has positive impact on patients and society. RI believes that meaningful patient involvement in health policy and programmes will lead to services that provide real value for patients, as well as reducing unnecessary waste.

Health literacy is a key aspect of empowerment. Although empowerment involves much more than becoming an educated/informed patients the right information and resources are fundamental tools for empowerment. Health literacy however, is more than information. It is defined variously as: The cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health. (WHO, The ability to make sound health decisions in the context of everyday life at home, in the community, at the workplace, the healthcare system, the market place and the political arena.

From a patient’s perspective, the knowledge and competence gained through health literacy leads to the strength and empowerment needed to manage well a disease and its impacts on quality of life.

Health literacy starts with good, easily understandable information: information is a tool towards improved health literacy. To make genuinely informed decisions about health and treatment, it is vital that patients can access all the relevant information needed in an easily understandable format. The health literate patient is then able to process, appraise and apply the information to their own personal circumstances. This is usually defined as “functional” health literacy. More advanced levels of health literacy are interactive health literacy and critical health literacy. Patients’ information needs are diverse and vary according to age, socio economic status, gender, beliefs, preferences and coping strategies, and according to their general literacy, first language, skills and abilities. Needs often change during the patient’s journey, as does the “empowerment status” of the individual patient.

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