Re: The responses to the “cancer drugs scandal” must fully involve patients—an essay by Tessa Richards
I have with great interest read the essay by Tessa Richards (1) on the response to the ”cancer drug scandal” and the many challenges faced by cancer patients during their treatment trajectory. Inadequate discussions about treatment efficacy, toxicity and potential late side effects seem universal across countries. Waiting times, national guidelines and fast-track cancer pathways are also governing the way the healthcare system is organized and run in Denmark and the importance of responding to individual patients’ needs and preferences is easily forgotten.
New cancer drugs are often approved based on a marginal survival benefit over existing treatment options or placebo. In this context, it is worth noting that the approvals are often based on a significant statistical difference in favour of the new drug, but it is rarely emphasized whether this difference is of substantial clinical benefit for the patients That may be one of the reasons why many clinicians don't take the medicines they prescribe for their patients (2). Given the difference between statistical difference and clear clinical benefit it's vital that healthcare professionals discuss the magnitude (or lack of) of potential benefit, harms and risks with patients and relatives. Studies suggest that oncologists often do not involve patients in the decision-making process to the extent they desire (3-5). In addition, little attention has been paid to organisational and system level factors in which these interactions and decisions are embedded, and how to modify these to ensure that shared decision making becomes part of routine practice.
Our response to this challenge has been to establish a Centre for Shared Decision Making (6-7) at a Danish cancer hospital and to propose a systematic, organisation-wide collaborative team based approach aimed at embedding a patient centred culture from top to bottom in clinical cancer care. The Centre for Shared Decision Making has three patients on board in the steering committee. Our experience has shown the need for solid management foundation and support, early involvement of leading clinicians in building patient decision aids, and training staff in how to do shared decision making in practice. We have developed five decision aids for breast cancer, lung cancer, herniated disc genetic testing and CA125 follow-up for ovarian cancer patients to be used during consultation with the clinician. The patient decision aids have been developed in co-creation with patients and with a school of design. The clinical testing of our decision aids is entering the last project phase and we have started up a project, to support clinicians to build their own decision aids for conditions and situations which are of particular interest to them and their patients. To facilitate this we have developed a manual to inform the compilation of an online decision aid template with specific content. Currently, we then use print version of the patient decision aids in the clinic since this is the format we have found that our cancer patients, who are usually older, prefer.
A major challenge has been to combat the “I do it already culture” – from clinicians who believe that shared decision making is old wines in new bottles and that they do it already. Furthermore, there are many misconceptions. For example clinicians may use the phrase "It's you as a patient who decides" and thereby think they are practicing shared decision making without understanding that it’s the process which should be shared and that one of their most important tasks is to help the patient to identify what is important to him or her and to facilitate decision making together.
In my opinion, we need to confront our failure to understand and implement shared decision making if we are to get better at it and to ensure that both health professionals and the public fully understand what the process entails.
References:
1: Richards T: The responses to the “cancer drugs scandal” must fully involve patients—an essay by Tessa Richards. BMJ 2017;359:j4956
2: Periyakoil VS, Neri E, Fong A, Kraemer H (2014) Do Unto Others: Doctors' Personal End-of-Life Resuscitation Preferences and Their Attitudes toward Advance Directives. PLoS ONE 9(5): e98246.
3. Tariman JD, Berry DL, Cochrane B, Doorenbos A, Schepp K. Preferred and actual participation roles during health care decision making in persons with cancer: a systematic review. Annals of oncology : official journal of the European Society for Medical Oncology / ESMO. 2010;21(6):1145-51.
4. Kehl KL, Landrum MB, Arora NK, Ganz PA, van Ryn M, Mack JW, et al. Association of Actual and Preferred Decision Roles With Patient-Reported Quality of Care: Shared Decision Making in Cancer Care. JAMA Oncol. 2015;1(1):50-8.
5. Stacey D, Samant R, Bennett C. Decision making in oncology: a review of patient decision aids to support patient participation. CA Cancer J Clin. 2008;58(5):293-304.
6. Centre for Shared Decision Making – Lillebaelt Hospital. Webpage: www.cffb.dk
7. Dahl Steffensen K, Hjelholt Baker V, Vinter MM. Implementing shared decision making in Denmark: First steps and future focus areas. Z Evid Fortbild Qual Gesundhwes. 2017 Jun;123-124:36-40.
Karina Dahl Steffensen
MD, PhD, Associate Professor
Director Center for Shared Decision Making
Department of Clinical Oncology
Vejle Hospital
Beriderbakken 4
DK-7100 Vejle
Denmark
Institute of Regional Health Research
Faculty of Health Sciences
University of Southern Denmark
Winsløwparken 19, 3
DK-5000 Odense C
Competing interests:
No competing interests
30 November 2017
Karina Dahl Steffensen
Director Center for Shared Decision Making
Department of Clinical Oncology, Vejle Hospital, Beriderbakken 4, DK-7100 Vejle, Denmark
Rapid Response:
Re: The responses to the “cancer drugs scandal” must fully involve patients—an essay by Tessa Richards
I have with great interest read the essay by Tessa Richards (1) on the response to the ”cancer drug scandal” and the many challenges faced by cancer patients during their treatment trajectory. Inadequate discussions about treatment efficacy, toxicity and potential late side effects seem universal across countries. Waiting times, national guidelines and fast-track cancer pathways are also governing the way the healthcare system is organized and run in Denmark and the importance of responding to individual patients’ needs and preferences is easily forgotten.
New cancer drugs are often approved based on a marginal survival benefit over existing treatment options or placebo. In this context, it is worth noting that the approvals are often based on a significant statistical difference in favour of the new drug, but it is rarely emphasized whether this difference is of substantial clinical benefit for the patients That may be one of the reasons why many clinicians don't take the medicines they prescribe for their patients (2). Given the difference between statistical difference and clear clinical benefit it's vital that healthcare professionals discuss the magnitude (or lack of) of potential benefit, harms and risks with patients and relatives. Studies suggest that oncologists often do not involve patients in the decision-making process to the extent they desire (3-5). In addition, little attention has been paid to organisational and system level factors in which these interactions and decisions are embedded, and how to modify these to ensure that shared decision making becomes part of routine practice.
Our response to this challenge has been to establish a Centre for Shared Decision Making (6-7) at a Danish cancer hospital and to propose a systematic, organisation-wide collaborative team based approach aimed at embedding a patient centred culture from top to bottom in clinical cancer care. The Centre for Shared Decision Making has three patients on board in the steering committee. Our experience has shown the need for solid management foundation and support, early involvement of leading clinicians in building patient decision aids, and training staff in how to do shared decision making in practice. We have developed five decision aids for breast cancer, lung cancer, herniated disc genetic testing and CA125 follow-up for ovarian cancer patients to be used during consultation with the clinician. The patient decision aids have been developed in co-creation with patients and with a school of design. The clinical testing of our decision aids is entering the last project phase and we have started up a project, to support clinicians to build their own decision aids for conditions and situations which are of particular interest to them and their patients. To facilitate this we have developed a manual to inform the compilation of an online decision aid template with specific content. Currently, we then use print version of the patient decision aids in the clinic since this is the format we have found that our cancer patients, who are usually older, prefer.
A major challenge has been to combat the “I do it already culture” – from clinicians who believe that shared decision making is old wines in new bottles and that they do it already. Furthermore, there are many misconceptions. For example clinicians may use the phrase "It's you as a patient who decides" and thereby think they are practicing shared decision making without understanding that it’s the process which should be shared and that one of their most important tasks is to help the patient to identify what is important to him or her and to facilitate decision making together.
In my opinion, we need to confront our failure to understand and implement shared decision making if we are to get better at it and to ensure that both health professionals and the public fully understand what the process entails.
References:
1: Richards T: The responses to the “cancer drugs scandal” must fully involve patients—an essay by Tessa Richards. BMJ 2017;359:j4956
2: Periyakoil VS, Neri E, Fong A, Kraemer H (2014) Do Unto Others: Doctors' Personal End-of-Life Resuscitation Preferences and Their Attitudes toward Advance Directives. PLoS ONE 9(5): e98246.
3. Tariman JD, Berry DL, Cochrane B, Doorenbos A, Schepp K. Preferred and actual participation roles during health care decision making in persons with cancer: a systematic review. Annals of oncology : official journal of the European Society for Medical Oncology / ESMO. 2010;21(6):1145-51.
4. Kehl KL, Landrum MB, Arora NK, Ganz PA, van Ryn M, Mack JW, et al. Association of Actual and Preferred Decision Roles With Patient-Reported Quality of Care: Shared Decision Making in Cancer Care. JAMA Oncol. 2015;1(1):50-8.
5. Stacey D, Samant R, Bennett C. Decision making in oncology: a review of patient decision aids to support patient participation. CA Cancer J Clin. 2008;58(5):293-304.
6. Centre for Shared Decision Making – Lillebaelt Hospital. Webpage: www.cffb.dk
7. Dahl Steffensen K, Hjelholt Baker V, Vinter MM. Implementing shared decision making in Denmark: First steps and future focus areas. Z Evid Fortbild Qual Gesundhwes. 2017 Jun;123-124:36-40.
Karina Dahl Steffensen
MD, PhD, Associate Professor
Director Center for Shared Decision Making
Department of Clinical Oncology
Vejle Hospital
Beriderbakken 4
DK-7100 Vejle
Denmark
Institute of Regional Health Research
Faculty of Health Sciences
University of Southern Denmark
Winsløwparken 19, 3
DK-5000 Odense C
Competing interests: No competing interests