Pacientų žinių įgalinimas internetinėse sveikatos bendruomenėse

LTSveikata 4.0 revoliucijos kontekste kuriamos ir diegiamos pažangiausios sveikatos priežiūros technologijos, o pasaulinė pandemija dar labiau išryškino virtualaus bendravimo ir žinių dalinimosi socialiniuose tinkluose reikšmę tiek pacientams, tiek sveikatos priežiūros sistemoms. Šių dviejų transformuojančių pokyčių sandūroje fizinį sveikatos priežiūros specialistų ir pacientų bendravimą kaip pagrindinę lėtinių ligų stebėjimo ir valdymo formą keičia sąveika per skaitmenines sveikatos technologijas. Įvairiais tyrimais pagrįsta, kad socialiniai santykiai sukuria teigiamą efektą, ypač vykdant lėtinių ligų prevenciją ir gydant jas. Numatoma, kad artimiausius penkerius metus sveikatos priežiūros modelis dar toliau nukryps nuo čia ir dabar sveikatos priežiūros valdymo ir koncentruosis į tęstinį sveikatos priežiūros procesą, pagrįstą technologijomis. Fizinį sveikatos priežiūros specialistų ir pacientų bendravimą pakeis skaitmeninės sveikatos technologijos – pacientų bendravimas naudojant programėlę ir pacientų stebėjimas bei diagnostika nuotoliniu būdu. Internetinių lėtinėmis ligomis sergančių pacientų bendruomenių reikšmė ta, kad palaikydamos socialinius santykius jos suteikia prieinamą būdą dalintis turimomis žiniomis ir taip kurti naujas žinias. Tokiu būdu žinios „auginamos“ ir didina pacientų galimybes adekvačiai savipriežiūrai kasdieniame gyvenime. Kas būdinga pacientų įgalinimui? Kokie yra pacientų žinių įgalintojai? Kokie yra lėtinėmis ligomis sergančių pacientų vaidmenys ir jų žinių dalinimosi elgsenos bruožai internetinėse sveikatos bendruomenėse? Kokia tikėtina skaitmeninių sveikatos technologijų ateitis ir kokie iššūkiai kyla suinteresuotiems skaitmenine sveikata? Šie ir daugelis kitų klausimų aptariami mokslo monografijoje.

ENThe rise of technology in healthcare is an ever-increasing reality driven by digital transformation. A number of medical innovations have already led to better public health, including hygiene, prevention of infectious diseases, accurate diagnostics, therapeutic devices, biological pharmaceutical compounds and minimally invasive surgical procedures (Biot et al., 2019). Despite the wide scale of medical innovation and the activity of researchers, inventors and developers of effective medical solutions, the number of people suffering from chronic diseases has been constantly growing, which is a challenge for health systems worldwide. Chronic diseases usually develop slowly, last for an indefinite period of time (but not less than 6 months), worsen the over- all state of health, require long-term and professional care of the patient, but are indeterminate when predicting their future course. Treatment of chronic diseases is problematic or impossible; hence, the focus is on improving the quality of the patient's daily life. Long-term use of medications, routine patient care and crises requiring hospitalization (The Encyclopedia of World Problems & Human Potential) result in high financial and time costs of treating these diseases, which overburdens healthcare systems.The mission of the modern public health system is to improve the health of the population and reduce health inequalities through organized efforts of institutions and the entire society. Chronic diseases are identified as a sustainability challenge for European health systems because the growth of chronic diseases due to the aging of the population and the longer life expectancy requires that the financial investment is increased, and the needs and expectations of patients are met effectively (EPF, 2017). In this context, researchers agree on the importance of a paradigm shift in the approach to patients with chronic diseases from disease-centeredness to patient-centeredness, them being active partners in healthcare (Holmström, Röing, 2010). The patient, as an active partner, could independently manage the disease, and make rational, daily decisions related to their health condition, thus ensuring their health-favorable behavior (Schulz, Nakamoto, 2013; Small et al, 2013). The health behavior of patients with chronic diseases reduces the financial burden on the health-care sector (Anderson, Funnell, 2010; Holmström, Röing, 2010), while active collaboration between patients and healthcare institutions facilitates the identification of the patients' needs and expectations. An essential prerequisite for the patient self-management is patient empowerment (Asimakopoulou et al., 2012; Schulz, Nakamoto, 2013). Patients are empowered to make independent disease management decisions and to be responsible primarily when they have knowledge related to their disease (Asimakopoulou et al., 2012a; Schulz, Nakamoto, 2013), and when they can purposefully use it in making said decisions. However, for such purposeful use of empowered patient knowledge, there should be specific preconditions, the so-called 'knowledge enablers'.The context of chronic diseases means that the specific expertise of patients is formed simply because they are forced to live with the symptoms and consequences of their disease on a daily basis and periodically communicate with healthcare professionals. Patient involvement in the management of their disease evolves: firstly, patients assume the role of com- plaint-makers, then they provide information about their conditions, listen and respond, consult and advise others, until, finally, they fully participate and are involved in decision-making for chronic disease management (Bate, Robert, 2006). An effective practice of empowerment is not about coping or adapting, but about in- creasing the real power so that individuals are able to protect themselves from the problem or change it. Peterson (2014) emphasizes that empowerment is an active, participatory process through which individuals acquire greater control over their lives, gain rights and reduce marginalization. As patients are actively involved in making decisions related to their health, a need to identify the available knowledge, obtain new knowledge, develop it, share it with interested parties and exploit it in making effective decisions for disease management is formed. Thus, patients' knowledge about their chronic disease and the sharing of this knowledge in social interaction stimu- lates the fulfilment of the empowerment goal - it increases the personal power in everyday decisions related to the chronic disease (thus, it acts as an enabler). According to Menon, George (2018), one of the essential means of effectively empowering a patient to manage their chronic disease is the possibility of accessing online health communities and participating in them.