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Iran Red Cres Med J. 2014 January; 16(1): e12454. DOI: 10.5812/ircmj.12454 Reseach Article Published online 2014 January 5. Patient Involvement in Health Care Decision Making: A Review 1 1,* 1 2 Shaghayegh Vahdat ; Leila Hamzehgardeshi ; Somayeh Hessam ; Zeinab Hamzehgardeshi 1Department of Health Service Administration, Science and Research Branch, Islamic Azad University, Shiraz, IR Iran 2Department of Midwifery, Mazandaran University of Medical Sciences, Sari, IR Iran *Corresponding Author : Leila Hamzehgardeshi, Department of Health Service Administration, Science and Research Branch, Islamic Azad University, Shiraz, IR Iran. Tel: +98- 7283113100, Fax: +98-7284692110, E-mail: [email protected] Received: ; Revised: ; Accepted: May 24, 2013 August 1, 2013 September 1, 2013 Background: Patient participation means involvement of the patient in decision making or expressing opinions about different treatment methods, which includes sharing information, feelings and signs and accepting health team instructions. Objectives: Given the importance of patient participation in healthcare decision making which empowers patients and improves services and health outcomes, this study was performed to review previous studies on patient participation in healthcare decision making. Materials and Methods: To prepare this narrative review article, researchers used general and specific search engines, as well as textbooks addressing this subject for an in-depth study of patient involvement in healthcare decision-making. As a result, 35 (out of 100 relevant) articles and also two books were selected for writing this review article. Results: Based on the review of articles and books, topics were divided into six general categories: definition of participation, importance of patient participation, factors influencing participation of patients in healthcare decisions, method of patient participation, tools for evaluating participation, and benefits and consequences of patient participation in health care decision-making. Conclusions: In most studies, factors influencing patient participation consisted of: factors associated with health care professionals such as doctor-patient relationship, recognition of patient’s knowledge, allocation of sufficient time for participation, and also factors related to patients such as having knowledge, physical and cognitive ability, and emotional connections, beliefs, values and their experiences in relation to health services. Keywords: Patient; Decision-Making; Health Care 1. Background In various scientific fields, participation has different the person’s participation in treatment decisions made definitions. In sociology, participation means having a about his own health issues (3, 4). In another view, patient share in something, and benefiting from that share, or participation means involvement of the patient in shar- taking part in a group and thus collaborating with that ing information, feelings and accepting doctors’ and group. In political sciences, participation means the fol- nurses’ instructions (1). lowing: if people do not feel distinct differences between Patients’ participation in decision making in health different issues they are faced with, they do not care care and treatment is not a new area, but currently it about them and consider their actions ineffective, and has become a political necessity in many countries and if people, due to limited knowledge and awareness, con- health care systems around the world (3). A review of the sider their participation ineffective, they prefer to have literature reveals that participation of patients in health less participation (1). Investigation of studies on health care has been associated with improved treatment out- care shows that the focus of interest has been on partici- comes. Moreover, this participation causes improved pation of patients in care and treatment decision mak- control of diabetes, better physical functioning in rheu- ing process, using such terminologies as “involvement”, matic diseases, enhanced patients' compliance with sec- “collaboration” and “partnership” of patients, “client”, ondary preventive actions and improvement in health of “consumer”, and “user” (2). There are numerous views on patients with myocardial infarction (5-8). Emphasizing the concept of patient participation. One view considers the importance of participation in decision making pro- Implication for health policy/practice/research/medical education: Given that patient participation results in improved health outcome, enhanced quality of life, more compliance and cost effectiveness of services, if pa- tients are regarded as equal partners in healthcare, they will actively participate in their own health care process, and would more carefully follow their own care. Therefore, health professionals generally have a positive attitude towards patient participation, and consider this concept as a special privilege for themselves and the patients. Thus, planning and providing patient-oriented healthcare based on the opinions, needs, and preferences of patients are recommended. Copyright © 2014, Iranian Red Crescent Medical Journal; Published by Kowsar Corp. This is an open-access article distributed under the terms of the Creative Com- mons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Vahdat S et al. cess motivates the service provider and the health care care decision-making.” We included all papers that de- team to promote participation of patients in treatment scribed the effects of involving patients in health care decision making. These efforts include enhancement of decision-making. At the first step, 100 abstracts and 5 patient access to multifaceted information providing books were read by the authors. After this stage 30 irrel- systems and tools that help patients in decision making evant articles and 3 books were excluded. At the second (9, 10). With enhanced patient participation, and consid- step, 70 full text articles were read by the authors. At this ering patients as equal partners in healthcare decision stage 35 irrelevant articles were excluded. Finally, authors making patients are encouraged to actively participate in reviewed 35 papers and 2 books. their own treatment process and follow their treatment 3.1.2. Exclusion Criteria plan and thus a better health maintenance service would be provided (11). We excluded papers that described patient involvement 2. Objectives in other activities such as research, community devel- opment, health promotion, and the effects of involving In this study we aimed to review previous studies on pa- patients in the planning and development of health care tients' participation in health care decisions. programs. 3. Materials and Methods 3.2. Categorization of Studies General databases like Google Scholar, and specialized da- Totally, one hundred articles and 5 books were searched tabases such as Medlib, Magiran, Iranmedex, SID, Scopus, in the databases. All articles were reviewed concerning Pubmed, Springer, and Science Direct, as well as textbooks the concept of patient participation in healthcare deci- addressing patients’ participation in healthcare were used. sions, related factors and measuring tools. Eventually, Keywords used to retrieve the relevant information from 35 articles and two books were selected for the study. We 1992 to 2012 were "patient engagement", "user involve- reviewed 14 articles and 1 book from 1992 until 2005, 21 ment", "patient involvement", "patient participation", "de- articles and 1 book from 2006 until 2012. cision making", "health care", "quantitative study", "quali- 4. Results tative study", "measurement", and "instrument". 3.1. Search Strategy Review of articles and books led to arrangement of topics into six general categories: definition of concept of partici- The search strategy for required articles was, for exam- pation; importance of patient participation; factors influ- ple, as follows: (i) one or more of text word terms relating encing participation of patients in health care decisions; to decision-making or patient involvement, and (ii) text method of patient participation process; patient partici- word terms describing concept of patient participation. pation tools and techniques; benefits and consequences The text word terms were correspondingly modified for of patient participation in health care decision-making. use in different databases. The key words which were Results of some of the studies on participation of patients used in this study were as follows: patient involvement; in healthcare decisions are presented in Table 1. decision-making; health care; patient participation; 4.1. Definition of the Concept of Participation shared decision-making. Limitation rule applied to the search strategy was the presence of the key words in the In Oxford dictionary, the word “participation” has been title and abstract. A large number of titles and abstracts defined as engagement and involvement. This word is de- were generated from these searchers. Two authors inde- rived from the Latin word “Participare”, which means shar- pendently assessed this output and retrieved relevant ing (1). Personal participation is participation of the person articles for further assessment. The degree of agreement in his own health care decisions, and public participation between the authors assessing the content was calcu- is referred to active group participation or participation of lated using the kappa coefficient which was found to be a person as representative of the group in developing the adequate (kappa = 0.79). health system’s policies and plans. In recent years, patients 3.1.1. Inclusion Criteria and community participation has increased and patients and public more widely engage into it. Considering that We included papers that described the involvement of people’s participation is voluntary, and it will not be re- patients, defined as “the active participation in health alized until the individual and collective benefits are ob- care decision-making, concept of patient participation, tained; therefore, clear explanation of directives and poli- patient involvement in health care consultations, factors cies and mutual understanding of people and community associated with patient involvement, impact of patient of healthcare programs are considered rules of engage- participation on clinical outcome, patient preferences ment and active participation of people, which will lead to for involvement, scales of patient involvement in health long-term partnership of both sides (3, 4). 2 Iran Red Cres Med J. 2014;16(1):e12454 Vahdat S et al. Table 1. Selected Summary of Some Studies on Patients’ Participation in Healthcare Decisions Country of Study Year of Study Number of Participants/ Results Study Population Scotland 2008 13 Participation as cooperation to understand information, not just seeking information Sweden 2004 10 Participation as trusting, understanding, seeking and main- taining a sense of control England 2000 44 The relationship of patients’ involvement with underlying factors, type and severity of disease, and patient-specialist relationship 11 European countries 2000 330 The relationship of degree of patients’ involvement with doc- tor-patient interaction, patients' desire to participate, patients' demographics (literacy, high mental agility) Sweden 2006 26 The relationship between patients' involvement with knowl- edge, mental, physical and emotional capacity Australia 2006 73 The effect of patient-doctor interaction (discussion, trust) and doctors' interpersonal skills on participation Scotland 2007 20 The relationship between patients’ involvement with factors of respectful and friendly behavior, non-judgmental approach, doctors’ attention to patients’ views, clear explanation by doc- tors Sweden 2006 900 The relationship between patients’ involvement and factors of provision of information and explaining it according to per- sonal needs, staff acknowledgement of patients’ knowledge 4.2. Importance of Participation Many studies have emphasized the concept of patient participation. Forbat et al have defined participation as cooperation for understanding information, as opposed Since adoption of any policies or decisions associated to merely searching for information (12) (Table 1). In Eldh with health and treatment services eventually affects study, it is considered as being trusting, understanding patients’ lives, patient participation in health affairs and preserving feeling of control and recognizing re- and development of macro health policies are consid- sponsibility of oneself as a patient (13) (Table 1). ered among people’s civil rights. Also adoption of such In the Sahlsten study, patient participation in nurs- policies are considered a sign of adopting good moral ing care is defined as patient/nurse relationship, control values---and a manifestation of equity and accountabil- through the nurse, sharing information and knowledge, ity in many health care systems in developed countries. active participation in consultation and physical activity Planning and provision of patient-oriented health care (2). There may be differences in definition and understand- services based on the opinions, needs, and preferences ing of people’s participation in different sectors of health of patients, those that care for them, and the communi- sciences. It is recommended that experts engaged in ty, is a key challenge in the health systems of developed health view the subject from three different perspectives; countries, and it is an essential element in enhancing and first, in the medical approach, health has been defined as improving health care systems in order to gain public ap- absence of disease, and people’s participation is defined proval and confidence. This leads to provision of more as carrying out whatever the doctor has ordered. The sec- appropriate and cost-effective services, and ultimately ond view is a health planning approach in which health enhanced health outcomes, quality of life, and satisfac- has been defined according to the World Health Organiza- tion of patients (15). tion’s definition, which is not merely absence of disease, Of the most important reasons for the reforms in health but physical, mental, and social well-being of people. In care systems in developed countries in the last ten years this view, people’s participation is defined as cooperation are changes in people’s values, beliefs, and attitudes in for receiving health services through payment of money, respect of changes in community expectations, changes equipment, or manpower. The third perspective is the so- in patterns of diseases, increased life expectancy, and in- cial development approach in which health is defined as a creasing emphasis on maximum level of health and qual- human condition, and people’s participation as active in- ity of life, particularly in the last few years of life, which volvement in decision making and response to programs. has been derived from the opinions of the public and the Usually a combination of these three approaches should community. One of the most fundamental principles and be considered as true patient participation (14). policies of the new health care systems in these countries 3 Iran Red Cres Med J. 2014;16(1):e12454 Vahdat S et al. is valuing patients’ rights, and considering them as the (cultural skills and ability to form therapeutically effective axis for providing services, with special emphasis on the relationships, engaging in cross-cultural communication, concept of patient and public participation and creating interviewing and assessing ethnic minority patients, ad- opportunities for all to share the decision on the method dressing conflict, negotiating care, managing cases in a of receiving health care services. culturally informed and appropriate way) (17) health care Ensuring that patient has appropriate information re- professionals' knowledge and beliefs (18) features relating garding the diagnosis and treatment is essential for pro- to the ethos and feel of healthcare encounters (welcom- viding safe and quality services. Providing appropriate ing; respectfulness; facilitation of patients’ contributions; information to the patients is an overwhelming process, and being non-judgmental) (22) patients’ relationship but given its valuable outcomes in line with patients’ em- with professionals (3, 9), doctor listens and gives informa- powerment in making decisions after receiving the neces- tion (19), practitioners attending to patients’ views and sary information, its development has become a necessity. patients feeling listened to; practitioners giving clear ex- Surveying patients’ experiences and measuring results planations based on their professional knowledge where of the services provided from the viewpoints of patients patients understand these (22), considering the patient would provide valuable information through which per- as an individual (23, 24), recognizing patients' knowledge formance of service providers (from viewpoints of pa- (24), presence of a primary nurse/physician, encourage- tients) can be compared. In this process, before and after ment of nurses and physicians to participate (19, 25), treat- every treatment procedure, the patient is asked about dif- ing patients as equal partners in healthcare, nurses and ferent aspects of quality of life such as level of pain, men- physicians having enough time for patients(25). tal health, and ability and to move. In this way, efficacy of 4.3.4. Factors Associated With Health Care Settings the treatment procedure, from the patient’s viewpoint, with regards to these three aspects of health is identified. Cultural appropriateness and competency of the system The Patient Advice and Liaison Services (PALS) in the new and organization, including: type and location of service, health care system in England have been designed for pro- care processes, procedures and regulations, type and loca- viding more accountability to patients and clients. This, tion of admission, (17) primary or secondary care (18) in fact, is a confidential service to ensure effective delivery of concerns and considerations of patients and service re- 4.3.5. Factors Related to Health Provider Tasks ceivers to resolve problems with the least amount of bu- Cultural appropriateness and competency of the specific reaucracy involved (4, 16). safety actions/behaviors (17); the required patient safety 4.3. Factors Influencing Patient Participation in behavior might challenge clinicians' clinical abilities (18). Health Care Decision-Making 4.4. Patient Participation Process It is highly important to know where to begin, whom 4.3.1. Patient-Related Factors to involve, in which processes and how they should be Demographic characteristics (17, 18); Personal character- engaged. Since participation implies creating opportuni- istics (reads a lot, is mentally ok, can express himself) (3, ties for people or groups to take part in decision making 19); Level of acculturation(17), cultural knowledge (19) be- toward a specific objective, thus, any action in the area of liefs, values and practices concerning health and care (17); patient and community participation should have a clear Having physical ability, cognitive and emotional relation objective. In addition, participation process necessitates with others (19, 20); Knowledge, beliefs, values and experi- identifying individuals who are affected by the program. ences in regard to mainstream health care services (17). This process is known as stakeholder analysis. During this process, four critical questions are to be answered: Firstly, 4.3.2. Disease-Related Factors who will be affected by the program or project? Second- ly, what kind of people worked in program in terms of Symptoms, stage, illness severity, experiences and mean- time, money, sources or interests? Thirdly, if the process ing of illness (17, 18), health outcomes, health expectations, doesn’t invite individuals to participate, which group (3, 17-19), types of illnesses (3). of people will question the organization? And fourthly, 4.3.3. Factors Related to Health Care Experts which people have authority for changes and improve- ment of program based on patients' and their health care The practitioner’s interpersonal communication skills provider experiences? The National Consumer Council (21) health care professional’s cultural competence, knowl- has outlined “nine” principles for participation processes edge (knowing how to practice in a culturally informed of patients and the public as follows: process must be able and competent manner), beliefs and values (cultural, mor- to affect change, process must be transparent, must have al and professional), attitudes (respectful versus racist and integrity and comprehensiveness, must be designed for a ethnocentric toward ethnic minority patients), behavior specific purpose, the process must include correct num- 4 Iran Red Cres Med J. 2014;16(1):e12454 Vahdat S et al. bers and type of people, it must ensure people’s respect, of their own personal health care needs and beliefs (26). give priority to participant’s debates, process must be re- The Control Preferences Scale (CPS) tool has been consid- viewed and re-evaluated to improve services, the partici- ered for those patients that can have a role in decisions. pating community must be well aware of the purpose of The control priority of preferences is defined as a person’s interactions (4). level of control, when he wants to make a decision about his treatment (27). CPS consists of 5 cards (A-E), each depict- 4.5. Patient Participation Tools for Evaluating the ing the text of different roles they have in decision mak- Participation ing, with a spectrum from fully active to fully passive. Card A: (fully active), I prefer to have the final choice about my It is important to identify opportunities, and choose suit- treatment. Card B: (semi-active), I prefer to make a decision able tools and methods to evaluate people or community after seriously considering the doctor’s opinions. Card C: participation. The following qualitative and quantitative (collaborative), I prefer to share the responsibility of deci- tools and techniques are used. sion making, regarding which treatment is best for me, 4.5.1. Quantitative Methods with my doctor. Card D: (semi-passive), I prefer my doc- tor to decide after seriously considering my views. Card E: Such as surveys, although valuable, they only a look at (fully passive), I prefer my doctor to decide about my treat- snapshot of patients’ thoughts and beliefs, and require ment (30). CPS tool has been used in many studies. In the precise design and operational management to achieve studies “it’s my body”: Does patient involvement in deci- valid results (4). For measuring patient participation, tools sion making reduce decision conflict? (31) and patient in- such as Patient Self-Advocacy Scale (PSAS) and Control volvement in surgery treatment decision for breast cancer Preferences Scale (CPS) are well known (26, 27). The PSAS (32), using CPS, patient participations were 59% and 37.1%, tool comprises 12 items, and the following dimensions: respectively. Increased Assertiveness, Increased Illness Education, and 4.5.2. Qualitative Methods Potential for Mindful Non-Adherence. Information about the disease and healthcare enables Such as focused group debates and interviews can also people to exchange mutual information with healthcare provide suitable data regarding patient’s values and be- providers. Education essentially helps enhance individ- liefs. Many studies have used qualitative methods for col- ual’s audacity and willingness to ask questions, and this lecting appropriate data, for example, Entwistle in his will lead to participation in health care decisions. Patients’ study used qualitative methods for collecting appropriate heightened knowledge and audacity, and their better data (22). In a study, methods used to attract participants reasoning will result in non-compliance with health pro- to patient participation programs included taking part in grams that are logically unacceptable to them (28). In the a group, workshop, meeting, seminar, group counseling, traditional compliance-gaining literature, patient non- and individual interview (33). adherence has been perceived by physicians as a form of deviance. However, Donovan and Blake asserted that 4.6. Benefits and Consequences of Patient non-adherence may not actually indicate deviance on Participation in Health Care Decision-Making the part of patients but instead may represent reasoned decision-making based on rational choices regarding life- The benefits of patient participation have been investi- style issues and treatments which are drawn from patient gated in many studies. These benefits include: increased beliefs, responsibilities, and preferences(29); in this sense, patient satisfaction and trust, higher patients’ quality of non-adherence can be viewed as "mindful" rather than life, reduced patients’ anxiety and emotions, better un- "mindless". Mindfulness is a state in which the individual derstanding of personal requirements, more positive and consciously seeks environmental cues. Applying this con- direct professional’s communication with positive and cept to adherence to treatment regimens, we can view lasting effects on health, patient empowerment and pro- non-adherence as a strategic or mindful action when it is viding better patient health, receiving different opinions based on contextual considerations (e.g., the patient’s own of patients about a common subject, planning and deci- health beliefs or life circumstances). Due to a desire for in- sion making improvements through combined opinions creased autonomy in their health care, activist patients of patients, improvement of monitoring and evaluating are likely to have positive perceptions of and be willing services, better decision making due to access to different to engage in instances of mindful non-adherence if they views, increased trust in services due to increased freedom, disagree with the efficacy of a physician’s treatment rec- knowledge and transparency, a substantial opportunity ommendations. In this case, instances of non-adherence for dealing with inequalities in health and access to servic- behavior are not irresponsible or unreasonable but rather es, encouragement of sense of independent responsibility, are carefully chosen actions based on the patients’ level of career promotion for most staff due to positive feedbacks, medical information about their disease and knowledge reduced possibility of patient dissatisfaction (11, 34, 35). 5 Iran Red Cres Med J. 2014;16(1):e12454 Vahdat S et al. 5. Discussion researchers. In this article, comprehensive information about the concept of patient’s involvement and its im- In this study, 100 articles and 5 books were reviewed. portance, factors influencing involvement, and tools of Finally, 35 out of 100 articles and also two books were involvement were presented. Both involvement and con- selected for writing this review article. Various distinct sultation have been regarded as two ends of a spectrum. factors affecting patients’ involvement in healthcare Given that decisions associated with health services affect decisions were considered by the researchers. Given the patients’ lives, thus, patients’ participation in health af- results, it can be argued that participation of patients is fairs is part of their rights, and symbolizes equity and not merely for consultation, seeking opinions, or use of responsiveness in many healthcare systems. This is what their actual and potential abilities, but also participation the present study is about, and what is meant by patients’ should result in better rehabilitation of patients. In this participation, which healthcare systems should take into case, by acquiring knowledge, skills, and self-confidence, consideration. In this study, factors affecting patients’ par- patients will be able to take care of their own health and ticipation have been extensively emphasized. A few tools manage to live life competently. have also been discussed by the researchers, and finally, re- The current study findings showed that effective rela- sults and benefits of patients’ participation in healthcare tionship of healthcare provider with patients is an impor- process have been described. Study limitations included tant contributing factor of patient involvement in deci- lack of access to full text version of some articles in some sion making. In addition, a literature review confirms that databases, which resulted in only partial use of these ar- patients, in their journey through the healthcare system ticles by the researchers. have the right to be treated respectfully and honestly, and where possible, be involved in their own healthcare deci- 5.2. Conclusion sions (36). Participation in decisions emphasizes priority of sensitive care, or helps when conditions of care are such In this study, considerations were given to the defini- that two or more treatment options are medically justified tion of concept of participation, importance of patient (9). For patients’ participation, mutual communication participation, factors influencing patient participation in between treatment team and the patient is necessary, so health care decisions, methods of providing patient par- that information and knowledge could be shared between ticipation, patient participation tools and techniques, and them, giving the patient a sense of control and respon- benefits and outcomes of patient participation in health sibility, and thus involving the patient in care activities care decisions. In most studies, factors influencing patient (mental or physical), to benefit and rehabilitate from this participation, factors associated with health care profes- involvement (13, 24, 37). sionals such as doctor-patient relationship, recognition Consistent with the present findings, studies have shown of patient’s knowledge, allocation of sufficient time for that patient-physician relationship, discussion about participation, and also factors associated with patients treatment options, signs of the disease, course of disease, such as having knowledge, physical and cognitive ability, patient’s readiness to actively participate based on knowl- and emotional connections, beliefs, values and their ex- edge and physical ability, cognitive factors and emotional periences have been in relation to health services. Patient relationships, organizational factors, mutual trust, agree- participation in health care decisions is a sign of valuing ment between treatment team and patient, facilitating humanity and individuality of the patient. Today, patient the grounds, giving responsibility to patient, and patient participation is regarded as a legal right of the patient as empowerment are factors associated with patient partici- well as an international gold standard for healthcare sys- pation (1, 9, 18, 20).The present findings indicated that the tems, and health professionals strive for this standard. Pa- patient participation in health care decision-making have tients must participate in decisions associated with plan- several benefits. Similar to previous studies, this study ning, performance, and evaluation of healthcare. showed that the added value of patients’ participation in 5.3. Recommendations healthcare includes receiving patient’s different points of view in relation to the same subject, improved services, Given that patient participation causes improved health better decisions due to access to different views, and career outcomes, enhanced quality of life, and delivery of more promotion for staff due to positive feedback (4). According appropriate and cost effective services, if patients are re- to this study results and similar studies, emphasis on the garded as equal partners in healthcare, they would active- importance of participation in decisions motivates the ly participate in their own health care process, and more service provider and healthcare team to further increase carefully monitor their own care. Therefore, health profes- patients’ participation in decisions (9, 10). sionals generally have a positive attitude toward patient 5.1. Strengths and Weaknesses participation, and consider this concept as a special privi- lege for themselves and the patients. Planning and provid- This review study on patient’s involvement in health- ing patient-oriented healthcare, based on opinions, needs, care decisions is the first of its type conducted by Iranian and preferences of patients are recommended. 6 Iran Red Cres Med J. 2014;16(1):e12454 Vahdat S et al. Acknowledgments CBR a partici- 14. Rifkin SusanB, Kangere Maria. What is participation. patory strategy in Africa. 2002:37–49. Third report of session. The authors appreciate the help of participants who col- 15. Patient and Public Involvement in the NHS. 7 laborated with us in this study. 2006; :2010. 16. Carlsson C, Nilbert M, Nilsson K. Patients' involvement in im- Authors' Contributions proving cancer care: experiences in three years of collaboration between members of patient associations and health care profes- Patient Educ Couns. 61 sionals. 2006; (1):65–71. 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Iran Red Cres Med J. 2014 January; 16(1): e12454. DOI: 10.5812/ircmj.12454 Reseach Article Published online 2014 January 5. Patient Involvement in Health Care Decision Making: A Review 1 1,* 1 2 Shaghayegh Vahdat ; Leila Hamzehgardeshi ; Somayeh Hessam ; Zeinab Hamzehgardeshi 1Department of Health Service Administration, Science and Research Branch, Islamic Azad University, Shiraz, IR Iran 2Department of Midwifery, Mazandaran University of Medical Sciences, Sari, IR Iran *Corresponding Author : Leila Hamzehgardeshi, Department of Health Service Administration, Science and Research Branch, Islamic Azad University, Shiraz, IR Iran. Tel: +98- 7283113100, Fax: +98-7284692110, E-mail: [email protected] Received: ; Revised: ; Accepted: May 24, 2013 August 1, 2013 September 1, 2013 Background: Patient participation means involvement of the patient in decision making or expressing opinions about different treatment methods, which includes sharing information, feelings and signs and accepting health team instructions. Objectives: Given the importance of patient participation in healthcare decision making which empowers patients and improves services and health outcomes, this study was performed to review previous studies on patient participation in healthcare decision making. Materials and Methods: To prepare this narrative review article, researchers used general and specific search engines, as well as textbooks addressing this subject for an in-depth study of patient involvement in healthcare decision-making. As a result, 35 (out of 100 relevant) articles and also two books were selected for writing this review article. Results: Based on the review of articles and books, topics were divided into six general categories: definition of participation, importance of patient participation, factors influencing participation of patients in healthcare decisions, method of patient participation, tools for evaluating participation, and benefits and consequences of patient participation in health care decision-making. Conclusions: In most studies, factors influencing patient participation consisted of: factors associated with health care professionals such as doctor-patient relationship, recognition of patient’s knowledge, allocation of sufficient time for participation, and also factors related to patients such as having knowledge, physical and cognitive ability, and emotional connections, beliefs, values and their experiences in relation to health services. Keywords: Patient; Decision-Making; Health Care 1. Background In various scientific fields, participation has different the person’s participation in treatment decisions made definitions. In sociology, participation means having a about his own health issues (3, 4). In another view, patient share in something, and benefiting from that share, or participation means involvement of the patient in shar- taking part in a group and thus collaborating with that ing information, feelings and accepting doctors’ and group. In political sciences, participation means the fol- nurses’ instructions (1). lowing: if people do not feel distinct differences between Patients’ participation in decision making in health different issues they are faced with, they do not care care and treatment is not a new area, but currently it about them and consider their actions ineffective, and has become a political necessity in many countries and if people, due to limited knowledge and awareness, con- health care systems around the world (3). A review of the sider their participation ineffective, they prefer to have literature reveals that participation of patients in health less participation (1). Investigation of studies on health care has been associated with improved treatment out- care shows that the focus of interest has been on partici- comes. Moreover, this participation causes improved pation of patients in care and treatment decision mak- control of diabetes, better physical functioning in rheu- ing process, using such terminologies as “involvement”, matic diseases, enhanced patients' compliance with sec- “collaboration” and “partnership” of patients, “client”, ondary preventive actions and improvement in health of “consumer”, and “user” (2). There are numerous views on patients with myocardial infarction (5-8). Emphasizing the concept of patient participation. One view considers the importance of participation in decision making pro- Implication for health policy/practice/research/medical education: Given that patient participation results in improved health outcome, enhanced quality of life, more compliance and cost effectiveness of services, if pa- tients are regarded as equal partners in healthcare, they will actively participate in their own health care process, and would more carefully follow their own care. Therefore, health professionals generally have a positive attitude towards patient participation, and consider this concept as a special privilege for themselves and the patients. Thus, planning and providing patient-oriented healthcare based on the opinions, needs, and preferences of patients are recommended. Copyright © 2014, Iranian Red Crescent Medical Journal; Published by Kowsar Corp. This is an open-access article distributed under the terms of the Creative Com- mons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Vahdat S et al. cess motivates the service provider and the health care care decision-making.” We included all papers that de- team to promote participation of patients in treatment scribed the effects of involving patients in health care decision making. These efforts include enhancement of decision-making. At the first step, 100 abstracts and 5 patient access to multifaceted information providing books were read by the authors. After this stage 30 irrel- systems and tools that help patients in decision making evant articles and 3 books were excluded. At the second (9, 10). With enhanced patient participation, and consid- step, 70 full text articles were read by the authors. At this ering patients as equal partners in healthcare decision stage 35 irrelevant articles were excluded. Finally, authors making patients are encouraged to actively participate in reviewed 35 papers and 2 books. their own treatment process and follow their treatment 3.1.2. Exclusion Criteria plan and thus a better health maintenance service would be provided (11). We excluded papers that described patient involvement 2. Objectives in other activities such as research, community devel- opment, health promotion, and the effects of involving In this study we aimed to review previous studies on pa- patients in the planning and development of health care tients' participation in health care decisions. programs. 3. Materials and Methods 3.2. Categorization of Studies General databases like Google Scholar, and specialized da- Totally, one hundred articles and 5 books were searched tabases such as Medlib, Magiran, Iranmedex, SID, Scopus, in the databases. All articles were reviewed concerning Pubmed, Springer, and Science Direct, as well as textbooks the concept of patient participation in healthcare deci- addressing patients’ participation in healthcare were used. sions, related factors and measuring tools. Eventually, Keywords used to retrieve the relevant information from 35 articles and two books were selected for the study. We 1992 to 2012 were "patient engagement", "user involve- reviewed 14 articles and 1 book from 1992 until 2005, 21 ment", "patient involvement", "patient participation", "de- articles and 1 book from 2006 until 2012. cision making", "health care", "quantitative study", "quali- 4. Results tative study", "measurement", and "instrument". 3.1. Search Strategy Review of articles and books led to arrangement of topics into six general categories: definition of concept of partici- The search strategy for required articles was, for exam- pation; importance of patient participation; factors influ- ple, as follows: (i) one or more of text word terms relating encing participation of patients in health care decisions; to decision-making or patient involvement, and (ii) text method of patient participation process; patient partici- word terms describing concept of patient participation. pation tools and techniques; benefits and consequences The text word terms were correspondingly modified for of patient participation in health care decision-making. use in different databases. The key words which were Results of some of the studies on participation of patients used in this study were as follows: patient involvement; in healthcare decisions are presented in Table 1. decision-making; health care; patient participation; 4.1. Definition of the Concept of Participation shared decision-making. Limitation rule applied to the search strategy was the presence of the key words in the In Oxford dictionary, the word “participation” has been title and abstract. A large number of titles and abstracts defined as engagement and involvement. This word is de- were generated from these searchers. Two authors inde- rived from the Latin word “Participare”, which means shar- pendently assessed this output and retrieved relevant ing (1). Personal participation is participation of the person articles for further assessment. The degree of agreement in his own health care decisions, and public participation between the authors assessing the content was calcu- is referred to active group participation or participation of lated using the kappa coefficient which was found to be a person as representative of the group in developing the adequate (kappa = 0.79). health system’s policies and plans. In recent years, patients 3.1.1. Inclusion Criteria and community participation has increased and patients and public more widely engage into it. Considering that We included papers that described the involvement of people’s participation is voluntary, and it will not be re- patients, defined as “the active participation in health alized until the individual and collective benefits are ob- care decision-making, concept of patient participation, tained; therefore, clear explanation of directives and poli- patient involvement in health care consultations, factors cies and mutual understanding of people and community associated with patient involvement, impact of patient of healthcare programs are considered rules of engage- participation on clinical outcome, patient preferences ment and active participation of people, which will lead to for involvement, scales of patient involvement in health long-term partnership of both sides (3, 4). 2 Iran Red Cres Med J. 2014;16(1):e12454 Vahdat S et al. Table 1. Selected Summary of Some Studies on Patients’ Participation in Healthcare Decisions Country of Study Year of Study Number of Participants/ Results Study Population Scotland 2008 13 Participation as cooperation to understand information, not just seeking information Sweden 2004 10 Participation as trusting, understanding, seeking and main- taining a sense of control England 2000 44 The relationship of patients’ involvement with underlying factors, type and severity of disease, and patient-specialist relationship 11 European countries 2000 330 The relationship of degree of patients’ involvement with doc- tor-patient interaction, patients' desire to participate, patients' demographics (literacy, high mental agility) Sweden 2006 26 The relationship between patients' involvement with knowl- edge, mental, physical and emotional capacity Australia 2006 73 The effect of patient-doctor interaction (discussion, trust) and doctors' interpersonal skills on participation Scotland 2007 20 The relationship between patients’ involvement with factors of respectful and friendly behavior, non-judgmental approach, doctors’ attention to patients’ views, clear explanation by doc- tors Sweden 2006 900 The relationship between patients’ involvement and factors of provision of information and explaining it according to per- sonal needs, staff acknowledgement of patients’ knowledge 4.2. Importance of Participation Many studies have emphasized the concept of patient participation. Forbat et al have defined participation as cooperation for understanding information, as opposed Since adoption of any policies or decisions associated to merely searching for information (12) (Table 1). In Eldh with health and treatment services eventually affects study, it is considered as being trusting, understanding patients’ lives, patient participation in health affairs and preserving feeling of control and recognizing re- and development of macro health policies are consid- sponsibility of oneself as a patient (13) (Table 1). ered among people’s civil rights. Also adoption of such In the Sahlsten study, patient participation in nurs- policies are considered a sign of adopting good moral ing care is defined as patient/nurse relationship, control values---and a manifestation of equity and accountabil- through the nurse, sharing information and knowledge, ity in many health care systems in developed countries. active participation in consultation and physical activity Planning and provision of patient-oriented health care (2). There may be differences in definition and understand- services based on the opinions, needs, and preferences ing of people’s participation in different sectors of health of patients, those that care for them, and the communi- sciences. It is recommended that experts engaged in ty, is a key challenge in the health systems of developed health view the subject from three different perspectives; countries, and it is an essential element in enhancing and first, in the medical approach, health has been defined as improving health care systems in order to gain public ap- absence of disease, and people’s participation is defined proval and confidence. This leads to provision of more as carrying out whatever the doctor has ordered. The sec- appropriate and cost-effective services, and ultimately ond view is a health planning approach in which health enhanced health outcomes, quality of life, and satisfac- has been defined according to the World Health Organiza- tion of patients (15). tion’s definition, which is not merely absence of disease, Of the most important reasons for the reforms in health but physical, mental, and social well-being of people. In care systems in developed countries in the last ten years this view, people’s participation is defined as cooperation are changes in people’s values, beliefs, and attitudes in for receiving health services through payment of money, respect of changes in community expectations, changes equipment, or manpower. The third perspective is the so- in patterns of diseases, increased life expectancy, and in- cial development approach in which health is defined as a creasing emphasis on maximum level of health and qual- human condition, and people’s participation as active in- ity of life, particularly in the last few years of life, which volvement in decision making and response to programs. has been derived from the opinions of the public and the Usually a combination of these three approaches should community. One of the most fundamental principles and be considered as true patient participation (14). policies of the new health care systems in these countries 3 Iran Red Cres Med J. 2014;16(1):e12454 Vahdat S et al. is valuing patients’ rights, and considering them as the (cultural skills and ability to form therapeutically effective axis for providing services, with special emphasis on the relationships, engaging in cross-cultural communication, concept of patient and public participation and creating interviewing and assessing ethnic minority patients, ad- opportunities for all to share the decision on the method dressing conflict, negotiating care, managing cases in a of receiving health care services. culturally informed and appropriate way) (17) health care Ensuring that patient has appropriate information re- professionals' knowledge and beliefs (18) features relating garding the diagnosis and treatment is essential for pro- to the ethos and feel of healthcare encounters (welcom- viding safe and quality services. Providing appropriate ing; respectfulness; facilitation of patients’ contributions; information to the patients is an overwhelming process, and being non-judgmental) (22) patients’ relationship but given its valuable outcomes in line with patients’ em- with professionals (3, 9), doctor listens and gives informa- powerment in making decisions after receiving the neces- tion (19), practitioners attending to patients’ views and sary information, its development has become a necessity. patients feeling listened to; practitioners giving clear ex- Surveying patients’ experiences and measuring results planations based on their professional knowledge where of the services provided from the viewpoints of patients patients understand these (22), considering the patient would provide valuable information through which per- as an individual (23, 24), recognizing patients' knowledge formance of service providers (from viewpoints of pa- (24), presence of a primary nurse/physician, encourage- tients) can be compared. In this process, before and after ment of nurses and physicians to participate (19, 25), treat- every treatment procedure, the patient is asked about dif- ing patients as equal partners in healthcare, nurses and ferent aspects of quality of life such as level of pain, men- physicians having enough time for patients(25). tal health, and ability and to move. In this way, efficacy of 4.3.4. Factors Associated With Health Care Settings the treatment procedure, from the patient’s viewpoint, with regards to these three aspects of health is identified. Cultural appropriateness and competency of the system The Patient Advice and Liaison Services (PALS) in the new and organization, including: type and location of service, health care system in England have been designed for pro- care processes, procedures and regulations, type and loca- viding more accountability to patients and clients. This, tion of admission, (17) primary or secondary care (18) in fact, is a confidential service to ensure effective delivery of concerns and considerations of patients and service re- 4.3.5. Factors Related to Health Provider Tasks ceivers to resolve problems with the least amount of bu- Cultural appropriateness and competency of the specific reaucracy involved (4, 16). safety actions/behaviors (17); the required patient safety 4.3. Factors Influencing Patient Participation in behavior might challenge clinicians' clinical abilities (18). Health Care Decision-Making 4.4. Patient Participation Process It is highly important to know where to begin, whom 4.3.1. Patient-Related Factors to involve, in which processes and how they should be Demographic characteristics (17, 18); Personal character- engaged. Since participation implies creating opportuni- istics (reads a lot, is mentally ok, can express himself) (3, ties for people or groups to take part in decision making 19); Level of acculturation(17), cultural knowledge (19) be- toward a specific objective, thus, any action in the area of liefs, values and practices concerning health and care (17); patient and community participation should have a clear Having physical ability, cognitive and emotional relation objective. In addition, participation process necessitates with others (19, 20); Knowledge, beliefs, values and experi- identifying individuals who are affected by the program. ences in regard to mainstream health care services (17). This process is known as stakeholder analysis. During this process, four critical questions are to be answered: Firstly, 4.3.2. Disease-Related Factors who will be affected by the program or project? Second- ly, what kind of people worked in program in terms of Symptoms, stage, illness severity, experiences and mean- time, money, sources or interests? Thirdly, if the process ing of illness (17, 18), health outcomes, health expectations, doesn’t invite individuals to participate, which group (3, 17-19), types of illnesses (3). of people will question the organization? And fourthly, 4.3.3. Factors Related to Health Care Experts which people have authority for changes and improve- ment of program based on patients' and their health care The practitioner’s interpersonal communication skills provider experiences? The National Consumer Council (21) health care professional’s cultural competence, knowl- has outlined “nine” principles for participation processes edge (knowing how to practice in a culturally informed of patients and the public as follows: process must be able and competent manner), beliefs and values (cultural, mor- to affect change, process must be transparent, must have al and professional), attitudes (respectful versus racist and integrity and comprehensiveness, must be designed for a ethnocentric toward ethnic minority patients), behavior specific purpose, the process must include correct num- 4 Iran Red Cres Med J. 2014;16(1):e12454 Vahdat S et al. bers and type of people, it must ensure people’s respect, of their own personal health care needs and beliefs (26). give priority to participant’s debates, process must be re- The Control Preferences Scale (CPS) tool has been consid- viewed and re-evaluated to improve services, the partici- ered for those patients that can have a role in decisions. pating community must be well aware of the purpose of The control priority of preferences is defined as a person’s interactions (4). level of control, when he wants to make a decision about his treatment (27). CPS consists of 5 cards (A-E), each depict- 4.5. Patient Participation Tools for Evaluating the ing the text of different roles they have in decision mak- Participation ing, with a spectrum from fully active to fully passive. Card A: (fully active), I prefer to have the final choice about my It is important to identify opportunities, and choose suit- treatment. Card B: (semi-active), I prefer to make a decision able tools and methods to evaluate people or community after seriously considering the doctor’s opinions. Card C: participation. The following qualitative and quantitative (collaborative), I prefer to share the responsibility of deci- tools and techniques are used. sion making, regarding which treatment is best for me, 4.5.1. Quantitative Methods with my doctor. Card D: (semi-passive), I prefer my doc- tor to decide after seriously considering my views. Card E: Such as surveys, although valuable, they only a look at (fully passive), I prefer my doctor to decide about my treat- snapshot of patients’ thoughts and beliefs, and require ment (30). CPS tool has been used in many studies. In the precise design and operational management to achieve studies “it’s my body”: Does patient involvement in deci- valid results (4). For measuring patient participation, tools sion making reduce decision conflict? (31) and patient in- such as Patient Self-Advocacy Scale (PSAS) and Control volvement in surgery treatment decision for breast cancer Preferences Scale (CPS) are well known (26, 27). The PSAS (32), using CPS, patient participations were 59% and 37.1%, tool comprises 12 items, and the following dimensions: respectively. Increased Assertiveness, Increased Illness Education, and 4.5.2. Qualitative Methods Potential for Mindful Non-Adherence. Information about the disease and healthcare enables Such as focused group debates and interviews can also people to exchange mutual information with healthcare provide suitable data regarding patient’s values and be- providers. Education essentially helps enhance individ- liefs. Many studies have used qualitative methods for col- ual’s audacity and willingness to ask questions, and this lecting appropriate data, for example, Entwistle in his will lead to participation in health care decisions. Patients’ study used qualitative methods for collecting appropriate heightened knowledge and audacity, and their better data (22). In a study, methods used to attract participants reasoning will result in non-compliance with health pro- to patient participation programs included taking part in grams that are logically unacceptable to them (28). In the a group, workshop, meeting, seminar, group counseling, traditional compliance-gaining literature, patient non- and individual interview (33). adherence has been perceived by physicians as a form of deviance. However, Donovan and Blake asserted that 4.6. Benefits and Consequences of Patient non-adherence may not actually indicate deviance on Participation in Health Care Decision-Making the part of patients but instead may represent reasoned decision-making based on rational choices regarding life- The benefits of patient participation have been investi- style issues and treatments which are drawn from patient gated in many studies. These benefits include: increased beliefs, responsibilities, and preferences(29); in this sense, patient satisfaction and trust, higher patients’ quality of non-adherence can be viewed as "mindful" rather than life, reduced patients’ anxiety and emotions, better un- "mindless". Mindfulness is a state in which the individual derstanding of personal requirements, more positive and consciously seeks environmental cues. Applying this con- direct professional’s communication with positive and cept to adherence to treatment regimens, we can view lasting effects on health, patient empowerment and pro- non-adherence as a strategic or mindful action when it is viding better patient health, receiving different opinions based on contextual considerations (e.g., the patient’s own of patients about a common subject, planning and deci- health beliefs or life circumstances). Due to a desire for in- sion making improvements through combined opinions creased autonomy in their health care, activist patients of patients, improvement of monitoring and evaluating are likely to have positive perceptions of and be willing services, better decision making due to access to different to engage in instances of mindful non-adherence if they views, increased trust in services due to increased freedom, disagree with the efficacy of a physician’s treatment rec- knowledge and transparency, a substantial opportunity ommendations. In this case, instances of non-adherence for dealing with inequalities in health and access to servic- behavior are not irresponsible or unreasonable but rather es, encouragement of sense of independent responsibility, are carefully chosen actions based on the patients’ level of career promotion for most staff due to positive feedbacks, medical information about their disease and knowledge reduced possibility of patient dissatisfaction (11, 34, 35). 5 Iran Red Cres Med J. 2014;16(1):e12454 Vahdat S et al. 5. Discussion researchers. In this article, comprehensive information about the concept of patient’s involvement and its im- In this study, 100 articles and 5 books were reviewed. portance, factors influencing involvement, and tools of Finally, 35 out of 100 articles and also two books were involvement were presented. Both involvement and con- selected for writing this review article. Various distinct sultation have been regarded as two ends of a spectrum. factors affecting patients’ involvement in healthcare Given that decisions associated with health services affect decisions were considered by the researchers. Given the patients’ lives, thus, patients’ participation in health af- results, it can be argued that participation of patients is fairs is part of their rights, and symbolizes equity and not merely for consultation, seeking opinions, or use of responsiveness in many healthcare systems. This is what their actual and potential abilities, but also participation the present study is about, and what is meant by patients’ should result in better rehabilitation of patients. In this participation, which healthcare systems should take into case, by acquiring knowledge, skills, and self-confidence, consideration. In this study, factors affecting patients’ par- patients will be able to take care of their own health and ticipation have been extensively emphasized. A few tools manage to live life competently. have also been discussed by the researchers, and finally, re- The current study findings showed that effective rela- sults and benefits of patients’ participation in healthcare tionship of healthcare provider with patients is an impor- process have been described. Study limitations included tant contributing factor of patient involvement in deci- lack of access to full text version of some articles in some sion making. In addition, a literature review confirms that databases, which resulted in only partial use of these ar- patients, in their journey through the healthcare system ticles by the researchers. have the right to be treated respectfully and honestly, and where possible, be involved in their own healthcare deci- 5.2. Conclusion sions (36). Participation in decisions emphasizes priority of sensitive care, or helps when conditions of care are such In this study, considerations were given to the defini- that two or more treatment options are medically justified tion of concept of participation, importance of patient (9). For patients’ participation, mutual communication participation, factors influencing patient participation in between treatment team and the patient is necessary, so health care decisions, methods of providing patient par- that information and knowledge could be shared between ticipation, patient participation tools and techniques, and them, giving the patient a sense of control and respon- benefits and outcomes of patient participation in health sibility, and thus involving the patient in care activities care decisions. In most studies, factors influencing patient (mental or physical), to benefit and rehabilitate from this participation, factors associated with health care profes- involvement (13, 24, 37). sionals such as doctor-patient relationship, recognition Consistent with the present findings, studies have shown of patient’s knowledge, allocation of sufficient time for that patient-physician relationship, discussion about participation, and also factors associated with patients treatment options, signs of the disease, course of disease, such as having knowledge, physical and cognitive ability, patient’s readiness to actively participate based on knowl- and emotional connections, beliefs, values and their ex- edge and physical ability, cognitive factors and emotional periences have been in relation to health services. Patient relationships, organizational factors, mutual trust, agree- participation in health care decisions is a sign of valuing ment between treatment team and patient, facilitating humanity and individuality of the patient. Today, patient the grounds, giving responsibility to patient, and patient participation is regarded as a legal right of the patient as empowerment are factors associated with patient partici- well as an international gold standard for healthcare sys- pation (1, 9, 18, 20).The present findings indicated that the tems, and health professionals strive for this standard. Pa- patient participation in health care decision-making have tients must participate in decisions associated with plan- several benefits. Similar to previous studies, this study ning, performance, and evaluation of healthcare. showed that the added value of patients’ participation in 5.3. Recommendations healthcare includes receiving patient’s different points of view in relation to the same subject, improved services, Given that patient participation causes improved health better decisions due to access to different views, and career outcomes, enhanced quality of life, and delivery of more promotion for staff due to positive feedback (4). According appropriate and cost effective services, if patients are re- to this study results and similar studies, emphasis on the garded as equal partners in healthcare, they would active- importance of participation in decisions motivates the ly participate in their own health care process, and more service provider and healthcare team to further increase carefully monitor their own care. Therefore, health profes- patients’ participation in decisions (9, 10). sionals generally have a positive attitude toward patient 5.1. Strengths and Weaknesses participation, and consider this concept as a special privi- lege for themselves and the patients. Planning and provid- This review study on patient’s involvement in health- ing patient-oriented healthcare, based on opinions, needs, care decisions is the first of its type conducted by Iranian and preferences of patients are recommended. 6 Iran Red Cres Med J. 2014;16(1):e12454 Vahdat S et al. Acknowledgments CBR a partici- 14. Rifkin SusanB, Kangere Maria. What is participation. patory strategy in Africa. 2002:37–49. Third report of session. The authors appreciate the help of participants who col- 15. Patient and Public Involvement in the NHS. 7 laborated with us in this study. 2006; :2010. 16. Carlsson C, Nilbert M, Nilsson K. Patients' involvement in im- Authors' Contributions proving cancer care: experiences in three years of collaboration between members of patient associations and health care profes- Patient Educ Couns. 61 sionals. 2006; (1):65–71. Authors equally contributed to development of ideas 17. Johnstone MJ, Kanitsaki O. Engaging patients as safety partners: and design of the study. Leila Hamzehgardeshi wrote the some considerations for ensuring a culturally and linguistically Health Policy. 90 first draft of the manuscript. All authors reviewed and ap- appropriate approach. 2009; (1):1–7. 18. Davis RE, Jacklin R, Sevdalis N, Vincent CA. Patient involvement in proved the final manuscript. patient safety: what factors influence patient participation and Health Expect. 10 engagement? 2007; (3):259–67. Financial Disclosure 19. Bastiaens H, Van Royen P, Pavlic DR, Raposo V, Baker R. Older peo- ple's preferences for involvement in their own care: a qualitative Patient Educ This manuscript do not have no financial disclosures. study in primary health care in 11 European countries. Couns. 68 2007; (1):33–42. Funding Support 20. Larsson IE, Sahlsten MJ, Sjostrom B, Lindencrona CS, Plos KA. 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