When seeking more effective patient pathways, there are no greater experts to engage than the patients themselves and their care partners. Increasingly, evidence and opinion supports that involving patients in the design and delivery of healthcare is not only feasible, but leads to enhanced quality of life, reduced hospital admissions, improved effectiveness, efficiency and quality of health services.
Additionally, engaged patients tend to be more satisfied with their healthcare experience, which can lead to higher retention rates and increased revenue for healthcare professionals (HCPs).
It is becoming clear that the burden of disease doesn’t just lie with the disease itself, but with hospital visits, side effects, effects on friends, families, care partners and many other factors. A holistic view of the disease experience can help to individualise care and prioritise what is important to patients. However, there are some hurdles between supporting this increasingly validated theory and putting it into practice.
Anthony De Mello, a Jesuit priest and psychotherapist, is quoted as saying: ‘The only way to change is by changing your understanding.’
Barriers to hearing the patient voice
Patients are increasingly asking for more responsive, open and transparent healthcare systems. More frequently, they also expect their doctors and nurses to consult with them during the decision-making process. Our experience is that many patients feel they have important insights to contribute, however, there is often no clear way of doing so.
One obvious sticking point in this process is finding the appropriate time, place and format to collect these insights. This may be partially due to competing priorities for HCPs: organisational, reputational, financial and many more. Consultations, for example, can involve many competing interests for both patient and practitioner, making it difficult to gather genuine patient input. However, more than anyone else, patients understand their own experiences, meaning they should have the opportunity to voice their opinion about the healthcare they receive.
Alf Collins, NHS England’s Clinical Director, Personalised Care Group, is quoted as saying: ‘The challenge now is to shift the focus of care and support services from “What is the matter with you?” towards “What matters to you?”.’
Clearing the hurdles
Improving patient pathways begins with a thorough understanding of patient experience. Individual interviews with patients and tools such as ethnography, can help gather unbiased information about what it is truly like to live with a condition. Ethnography is the study of people in their own environment, using methods such as participant observation and one-to-one interviewing. Technological advances have made the collection of patient opinion much more accessible; techniques such as remote data capture allow patients to share feedback comfortably through their mobile phones. Gathering information in this way helps us gain an authentic understanding of how patients talk about their condition and what is important to them.
Finding the right patients can also be a hurdle to hearing the patient voice. The amount of input patients want to or are able to provide may vary according to their backgrounds and preferences. For example, individuals with profound learning disabilities may find it more difficult to express their needs and preferences, nevertheless they may be able to provide insights through conversations with those who know them well. At Origins, we use our substantial healthcare network and recruitment partners to find a diverse range of patients who are willing and eager to engage. We also leverage social media and patient community leaders to access real, authentic responses.
It is not always clear how to proceed once information has been acquired from patient engagement activities. Lack of time and expertise to analyse and effectively use this information can be an obstacle to change, even after the right patients have been consulted, in the right format. Origins specialises in these solutions, particularly the co-creation of patient-focused materials, support programmes, internal education and training for patients and care partners.
At Origins, we believe it is important to give patients the opportunity to influence the future of healthcare and share their experiences with others. Educating and engaging patients will help them buy into their own healthcare experiences, leading to improved adherence and satisfaction with treatments.
Origins is a patient-focused specialist agency, creating and delivering strategy, insights, data and solutions to include the patient voice in every part of healthcare. Find out more about the benefits of the patient voice by contacting Su on contact@origins-patients.com.
References are available on request.
