In clinical situations in which there are two or more possible courses of action, patients should be given the opportunity to compare options and to clarify which suits them best, after considering their risks and benefits. Patient involvement in treatment decisions is now one of the ethical fundamentals of physicians’ work. It is part of the Professional Code for Physicians in Germany, the German Law on Patient Rights, and, where cancer screening is concerned, Book V of the German Social Security Code.

The decision-making process should include the following steps:

  • The doctor informs the patient that one of two or more options needs to be chosen.
  • The patient receives evidence-based information on the likelihood of benefit and risks of harm, in comprehensible form.
  • The doctor gives the patient the opportunity for a shared process of consideration in which the patient states his or her personal preferences.

This procedure is also called shared decision making.

Improved treatment outcomes

Two studies in this edition of Deutsches Ärzteblatt International address this subject:

Hauser et al. (1) investigate the effect of shared decision making on patient-relevant disease-related endpoints. Their systematic review includes 22 controlled trials. In 10 of the 22 trials, shared decision making led to better treatment outcomes in terms of at least one endpoint than the conventional form of communication. This means that in 12 studies it did not lead to better treatment outcomes.

The authors rightly recommend that their findings be interpreted with caution, as there are variations in clinical pictures, definitions and measurements of shared decision making, and the endpoints and how they are measured. However, essentially it can be said that shared decision making can lead to better treatment outcomes; the question is merely which factors determine the success or failure of shared decision making.

According to the findings of the systematic review by Hauser et al., shared decision making is most effective when the intervention concerns the patient directly and treatment compliance is increased. The specific clinical picture appears not to play a decisive role. A wealth of evidence from other studies suggests that shared decision making improves treatment outcomes most when it is part of a trusting relationship between physician and patient. Isolated measures are not sufficient.

Training for physicians improves communication skills

Härter et al. (2) conducted a randomized controlled trial to investigate the impact of 12 hours of training for physicians working in oncology on their shared decision-making skills and the satisfaction of their breast or colon cancer patients with the decisions made. Data was collected immediately after the treatment decision consultation and three months later.

One of the findings is that only 12% of the invited physicians replied, and ultimately only 23 physicians provided a total of 98 complete patient observations.

There was no difference between the intervention and control groups in terms of the primary outcome, satisfaction with the decision. However, unsurprisingly, training in shared decision making led to improved shared decision-making skills in physicians and, as a result, to less anxiety and depression among patients.

Negative and positive findings

Failure to achieve the desired number of study participants and the negative findings in terms of the primary outcomes can be interpreted as a negative finding. It is to Deutsches Ärzteblatt’s credit that it is nevertheless publishing the study. On the one hand, negative findings are no less important than positive ones. On the other, the issue of how future studies on shared decision making should be planned and designed in order to ensure a sufficient number of participants should be discussed and clarified. However, anyone who has an idea of the fears and needs of cancer patients will in fact rate the study as positive, thanks to the reduced anxiety and depression among patients of physicians trained in shared decision making.

Available studies

Scientific knowledge of shared decision making has advanced substantially in recent years. A number of Cochrane reviews and other systematic reviews show that shared decision making can improve patient knowledge, decision making, and, as stated above, treatment outcomes. However, there are difficulties with the still very varied definitions and theoretical foundations of shared decision making and the resulting differences in endpoints and measuring methods.

However, there is more than enough knowledge available to involve patients more directly in decision making. Patients themselves also wish to have more information and be more involved in decisions than is currently the case. This is suggested by, among other things, a representative repeat survey in Germany covering the years 2001 to 2012 (3).

Shared decision making may also be a way to increase the extent to which health interventions meet patients' needs and preferences, which is not currently guaranteed. This is indicated by, among other things, the regional differences in care (4) and the occasionally predominant financial considerations when treatment is indicated (5). Shared decision making should also contribute to solving the problem that patients often base their decision to participate in cancer screening on incomplete or erroneous information (6).

A boost for patient involvement

Some current developments in Germany will give patient involvement a boost. The new version of Good Practice Health Information (Gute Praxis Gesundheitsinfomation), about to be published, provides precise definitions of the criteria for evidence-based health information and the way in which it should be conveyed (7).

The relevant guideline group has pointed the way by integrating evidenced-based decision aids for patients regarding stent implantation and the choice between stent and bypass into the recently revised German National Disease Management Guideline for chronic coronary heart disease (8).

A further step towards patient orientation may be the “Smart decisions together” (“Gemeinsam Klug Entscheiden”) initiative of the Association of Scientific Medical Societies in Germany (AWMF, Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesellschaften) to improve care quality (9). By emphasizing “together,” this gives shared decision making and patient orientation the focus they deserve.

Conflict of interest statement
The author has received consultancy fees from the Bertelsmann Stiftung and the Federal Association of the AOK. He has received study funding (third-party funds) from the Bavarian Association of Statutory Health Insurance Physicians.

Translated from the original German by Caroline Shimakawa-Devitt, M.A.

Corresponding author:
Prof. Dr. med. David Klemperer
Faculty of Applied Social Sciences and Humanities
East Bavarian Institute of Technology, Regensburg
Seybothstr. 2
93053 Regensburg, Germany

Cite this as:
Klemperer D: Patient involvement as a means to improving care quality.
Dtsch Arztebl Int 2015; 112: 663–4. DOI: 10.3238/arztebl.2015.0663

1.
Hauser K, Koerfer A, Kuhr K, Albus C, Herzig S, Matthes J: Outcome-relevant effects of shared decision making—a systematic review. Dtsch Arztebl Int 2015; 112: 665–71 VOLLTEXT
2.
Härter M, Buchholz A, Nicolai J, et al.: Shared decision making and the use of decision aids—a cluster-randomized study on the efficacy of a training in an oncology setting. Dtsch Arztebl Int 2015; 112: 672–9. VOLLTEXT
3.
Braun B, Marstedt G: Partizipative Entscheidungsfindung beim Arzt: Anspruch und Wirklichkeit. In: Böcken J, Braun B, Repschläger U (eds.): Gesundheitsmonitor. Gütersloh: Bertelsmann Stiftung 2014; 107–131 MEDLINE
4.
Grote Westrick M, Zich K, Klemperer D, et al.: Faktencheck Gesundheit 2015: Regionale Unterschiede in der Gesundheitsversorgung im Zeitvergleich. Gütersloh: Bertelsmann-Stiftung; 2015.
5.
Reifferscheid A, Pomorin N, Wasem J: Ausmaß von Rationierung und Überversorgung in der stationären Versorgung. Dtsch Med Wochenschr 2015; 140: e129–35 CrossRef MEDLINE
6.
Wegwarth O, Gigerenzer G: “There is nothing to worry about”: Gynecologists’ counseling on mammography. Patient Educ Couns 2011, 84: 251–6 CrossRef MEDLINE
7.
Deutsches Netzwerk Evidenzbasierte Medizin: Gute Praxis Gesundheitsinformation 2015. www.ebm-netzwerk.de/gpgi (last accessed on 21 September 2015).
8.
Bundes­ärzte­kammer (BÄK), Kassenärztliche Bundesvereinigung (KBV), Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesellschaften (AWMF). Nationale VersorgungsLeitlinie Chronische KHK – Langfassung 3. Auflage. Version 1. 2014. www.leitlinien.de/nvl/khk (last accessed on 21 September 2015).
9.
Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesellschaften (AWMF) – Ad hoc Kommission „Gemeinsam Klug Entscheiden“. Manual Entwicklung von Empfehlungen im Rahmen der Initiative Gemeinsam Klug Entscheiden. Version 1.0, 2015. www.awmf.org/medizin-versorgung/gemeinsam-klug-entscheiden.html (last accessed on 21 September 2015).
Faculty of Social and Health Care Sciences, Ostbayerische Technische Hochschule Regensburg :
Prof. Dr. med.
Klemperer
1.Hauser K, Koerfer A, Kuhr K, Albus C, Herzig S, Matthes J: Outcome-relevant effects of shared decision making—a systematic review. Dtsch Arztebl Int 2015; 112: 665–71 VOLLTEXT
2.Härter M, Buchholz A, Nicolai J, et al.: Shared decision making and the use of decision aids—a cluster-randomized study on the efficacy of a training in an oncology setting. Dtsch Arztebl Int 2015; 112: 672–9. VOLLTEXT
3.Braun B, Marstedt G: Partizipative Entscheidungsfindung beim Arzt: Anspruch und Wirklichkeit. In: Böcken J, Braun B, Repschläger U (eds.): Gesundheitsmonitor. Gütersloh: Bertelsmann Stiftung 2014; 107–131 MEDLINE
4.Grote Westrick M, Zich K, Klemperer D, et al.: Faktencheck Gesundheit 2015: Regionale Unterschiede in der Gesundheitsversorgung im Zeitvergleich. Gütersloh: Bertelsmann-Stiftung; 2015.
5.Reifferscheid A, Pomorin N, Wasem J: Ausmaß von Rationierung und Überversorgung in der stationären Versorgung. Dtsch Med Wochenschr 2015; 140: e129–35 CrossRef MEDLINE
6.Wegwarth O, Gigerenzer G: “There is nothing to worry about”: Gynecologists’ counseling on mammography. Patient Educ Couns 2011, 84: 251–6 CrossRef MEDLINE
7.Deutsches Netzwerk Evidenzbasierte Medizin: Gute Praxis Gesundheitsinformation 2015. www.ebm-netzwerk.de/gpgi (last accessed on 21 September 2015).
8.Bundes­ärzte­kammer (BÄK), Kassenärztliche Bundesvereinigung (KBV), Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesellschaften (AWMF). Nationale VersorgungsLeitlinie Chronische KHK – Langfassung 3. Auflage. Version 1. 2014. www.leitlinien.de/nvl/khk (last accessed on 21 September 2015).
9.Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesellschaften (AWMF) – Ad hoc Kommission „Gemeinsam Klug Entscheiden“. Manual Entwicklung von Empfehlungen im Rahmen der Initiative Gemeinsam Klug Entscheiden. Version 1.0, 2015. www.awmf.org/medizin-versorgung/gemeinsam-klug-entscheiden.html (last accessed on 21 September 2015).