Listen, Dream, and Change: Using the Power of Patients to Improve Care
Summary: We need to make our care more patient-centered. The author illustrates with some examples from his daily practice that we should use the power of patients to achieve the necessary changes. Listening and dreaming appear to be important catalysts.
Keywords: Patient-centered care, change, communities, gynecology, health 2.0, in vitro fertilization, IVF.
Citation: Kremer JAM. Listen, dream, and change: using the power of patients to improve care. J Participat Med. 2012 Oct 17; 4:e25.
Published: October 17, 2012.
Competing Interests: Jan Kremer works at the Radboud University Nijmegen Medical Centre (80%) and at Booz & Company (20%). He holds 20% of the shares of MijnZorgnet BV.
Ten years ago I decided to start listening more closely to my patients. I invited 10 couples suffering infertility to Heyendael Castle in Nijmegen and asked them to evaluate our clinical services. That meeting caused a real paradigm shift in my professional life. Being an experienced gynecologist, I thought that I knew what was good or bad for my patients, but I was wrong. Needs and preferences of patients were not met sufficiently, the organization of care wasn’t transparent, the quality varied too much, and doctors lacked social skills. However, I was even more impressed by the latent and unused power of these patients, a power that is based on involvement with their condition. These patients wanted to be more than passive objects to whom care should be provided. They wanted to be active subjects; they wanted to participate.
Inspired by this meeting, our team of doctors, nurses, psychologists, and patients started to dream about better care that is respectful of, and responsive to, the needs and preferences of patients and that is guided by their values. We organized brainstorming meetings and dreamed about several approaches to use the power of patients to make our clinical services more patient-centered. Step by step, the ideas became manifest. We decided that is was time to act!
In 2003 we developed the Digital IVF Clinic, a website for patients of the Radboud IVF center. First, we asked patients about their preferences regarding Internet use. Based on the results, we decreased communication barriers by providing access to online communication with doctors, nurses, and peers through chat sessions and bulletin boards. We also provided online access to their own medical data, realizing that only well-informed patients can participate adequately.
Although it was not technologically difficult to program the software, nor very hard to solve identification, authorization, and security issues, the major challenge was to convince managers and professionals to support the practice. They were afraid that online access to medical information was not safe enough and could even harm patients by giving them too much information. We solved that resistance by spreading the enthusiastic feedback of patients and by modifying the project into an experiment with a sound evaluation by a PhD student. Although we failed to show a direct effect on empowerment in a small randomized trial, the Digital IVF Clinic was a great success overall. It had been online without any problem for more than nine years and was extensively used by the vast majority of our patients. It led to more trust, fewer patient complaints, and decreased need for visits to discuss various life circumstances or problems, and resulted in several prizes, including four consecutive Freya awards, the biennial prize of the national patient organization.
Allowing Patients to Determine the Number of Embryos
Shared decision making could be another way of using the power of patients. Allowing the patient to participate in determining the number of embryos to be transferred was a good way to do this. We developed a decision aid for the number of embryos to be transferred in IVF. One embryo decreases the pregnancy rate and two embryos increases the risk of delivering twins. While in most clinics doctors make the decision regarding how many embryos to transfer, we thought that patients should make this decision, since they are the ones who have to live with the consequences. In a randomized trial, we showed that the intervention with the use of our decision aid led to more single embryo transfers and lower costs. So patients can make cheaper and better decisions than their doctors.
Participation of patients in guideline implementation could also be useful. We made a patient version of the recommendations of the Dutch fertility guideline and asked patients to motivate their doctors to use them. Although we failed to show a direct effect on implementation, the process analysis showed that professionals should not be the only stakeholders for guideline implementation.
Patients could also play a role in guideline development. We created a wiki-like website, where Dutch patients could write and edit recommendations. We used this tool during the development of the new national fertility guideline. We made a commitment to the patients that we will include their recommendations in the new guideline. Patients used the website frequently and created together an impressive set of recommendations. The guideline was published in the summer of 2011 and contained 23 patient recommendations, mostly about organization of care, information provision, and attitude of professionals.
The feedback from patients about this wiki project inspired us to use wikis for patient participation in the development and maintenance of information leaflets. Patients are highly motivated and know a lot about the processes in our clinic. It would be a small step to include their suggestions into these informational documents. We used the existing online patient community of the Radboud IVF center, which already has a wiki module. We uploaded our existing patient leaflets into this module, which are now open for editing by both patients and professionals. They can read the text, change the content, and check the modifications. We will expect the evaluation soon.
To make services more patient-centered, one has to evaluate the effects of interventions on patients. Therefore, we developed together with patients the Patient Centredness Questionnaire for infertility (PCQi), which is based on the eight dimensions of patient-centerdness of the Picker Institute. The questionnaire addresses 53 care aspects and was generated by seven focus groups with 54 patients. We already benchmarked 29 Dutch fertility centers and gave them detailed feedback. Now we are working on an intervention study, where the national patient organization will audit fertility clinics, helped by the corresponding results of the PCQi. We are also planning an international version of the PCQi and hope to start the measurements this year.
The expanded use of the internet offers many new opportunities for patient participation. A grant of the Dutch ministry of health and a prize of the national innovation platform allowed us to provide a platform for health communities to facilitate cooperation and participation of patients. This software makes it possible to create online communities for patients and/or professionals, consisting of blogs, discussions, libraries, and wikis. Just click and start a new community. There are open and private health communities, and a very special one, the personal health community. The patient is the boss in this community and invites other people (eg, doctors) to be a member of his or her own virtual hospital. The first health communities have been created and we look forward to hearing about their experiences.
Let Patients Help
Ten years ago, the patients in Heyendael Castle were right; we have to improve our services and make them more patient-centered by using the power of patients. In our clinic, we started this change by listening to patients and by dreaming about promising approaches; a strategy that led to a series of concrete projects.
Of course these projects were not all without obstacles. Firstly, it was not always easy for us to convince doctors and nurses about the necessity of more patient participation. Secondly, it was not always easy for patients to get used to a bigger role in their treatment process. There were frontrunners, particularly in this group of relatively young and highly educated IVF patients, but the majority needed more time to get used to participation. Thirdly, most interventions were quite innovative with a relatively uncertain outcome. This made it not always easy to get funding and support at the beginning of the project. Finally, the scientific evaluation of these complex and dynamic changes was not without problems. Maybe it was too early for randomized trials to evaluate these dynamic and complex interventions. They did not always reveal clear results and presented some methodological problems. Probably, qualitative analyses are more suitable in these early stages of patient-centered innovations.
We learned several lessons from these projects. First of all, making services more patient-centered creates a lot of energy and fun. Patients appreciate these efforts very much, and as a doctor, you do your job in a way that once was the reason to choose this profession. Secondly, listening to patients is very useful. Patients are heavily involved and are the experts of their lives. They have more power than we would initially expect. Actually, you may conclude that patients are the fuel of the engine of patient-centered innovations. Thirdly, shared dreaming at the beginning of innovation is very useful as well. It creates a sound basis for change and mobilizes a lot of enthusiasm and power. Finally, qualitative and quantitative evaluation should be part of every innovation. It provides a lot of lessons and the results are important to persuade professionals.
“Let patients help” was the title of the performance of e-Patient Dave at the TEDx conference in Maastricht. Our patients showed that they are ready for this new participative role. We as doctors should trust them and should realize that listening to patients is the best catalyst for change.
- Kremer JAM, Barneveld J, Braat DDM. Het Ooijpoldermodel: de patiënt centraal in het regionale netwerk van fertiliteitzorg. Ned Tijdschr Ob & Gyn. 2002;115:208-10. ↩
- Haagen EC, Tuil W, Hendriks J, de Bruijn RPJ, Braat DDM, Kremer JAM. Current internet use and preferences of IVF and ICSI patients. Hum Reprod. 2003 (Oct);18(10):2073-8. ↩
- Tuil WS, ten Hoopen AJ, Braat DDM, de Vries Robbé PF, Kremer JAM. Patient-centred care: using online personal medical records in IVF practice. Hum Reprod. 2006 Nov;21(11):2955-9. ↩
- Tuil WS. IVF and Internet: evaluation of an interactive personal health record for IVF patients (Thesis). 1st ed. Nijmegen: Radboud University; 2008. ↩
- Tuil WS, Verhaak CM, Braat DDM, de Vries Robbé PF, Kremer JAM. Empowering patients undergoing in vitro fertilization by providing internet access to medical data. Fertil Steril. 2007 Aug; 88(2):361-8. ↩
- van Peperstraten AM, Hermens RP, Nelen WL, Stalmeier PF, Wetzels AM, Maas PH, Kremer JA, Grol RP. Deciding how many embryos to transfer after in vitro fertilisation: development and pilot test of a decision aid. Patient Educ Couns. 2010 Jan;78(1):124-9. ↩
- van Peperstraten A, Nelen W, Grol R, Zielhuis G, Adang E, Stalmeier P, Hermens R, Kremer J. The effect of a multifaceted empowerment strategy on decision making about the number of embryos transferred in in vitro fertilisation: randomised controlled trial. BMJ. 2010 Sep 30;341:c2501. ↩
- Mourad SM, Hermens RP, Liefers J, Akkermans RP, Zielhuis GA, Adang E, Grol RP, Nelen WL, Kremer JA. A multi-faceted strategy to improve the use of national fertility guidelines; a cluster-randomized controlled trial. Hum Reprod. 2011 Apr;26(4):817-26. ↩
- Anonymous. De Netwerkrichtlijn Subfertiliteit. Utrecht: NHG & NVOG; 2011. ↩
- van Empel IW, Aarts JW, Cohlen BJ, Huppelschoten DA, Laven JS, Nelen WL, Kremer JA. Measuring patient-centredness, the neglected outcome in fertility care: a random multicentre validation study. Hum Reprod. 2010 Oct;25(10):2516-26. ↩
- Aarts JW, Faber MJ, van Empel IW, Scheenjes E, Nelen WL, Kremer JA. Professionals’ perceptions of their patients’ experiences with fertility care. Hum Reprod. 2011 May;26(5):1119-27. ↩
Copyright: © 2012 Jan A.M. Kremer. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.