The Voice of the Parkinson Customer

Abstract

Background and Objectives:

To improve the care for patients with chronic neurological conditions like Parkinson’s disease, identifying the core needs of patients is crucial. In this article, we present the Voice of the Customer approach (originally developed in the field of industry to probe the clients’ needs), a novel methodology to identify these needs.

Methods:

A group of 12 discussants carried out in depth interviews to patients (n = 20), relatives (n = 12) and healthcare professionals (n = 11). The interviewers combined the most informative quotations into a comprehensive video, which was used as feedback to the interviewees. The interviewees then identified the most important needs in a consensus meeting.

Results and Conclusions:

The approach revealed that patients were more concerned about the impact of Parkinson’s disease on their daily lives than about the bio-medical aspects of the disease. Their top unmet needs were: (1) more self management; (2) better interdisciplinary collaboration between different healthcare professionals; (3) more time to discuss the future and possible scenarios; and (4) a healthcare professional acting as a single point of access, acting as personal case manager, either to solve problems directly or to direct patients to the professional best equipped to address the problem at hand. These results can now be used to further optimize the care for patients with Parkinson’s disease.

INTRODUCTION

To improve the care for patients with chronic neurological conditions like Parkinson’s disease, identifying the core needs of patients is crucial [1]. Usually, these needs are assessed by interviews, focus groups or questionnaires among patients or healthcare professionals. Kaiser Permanente, an American not-for-profit health plan, developed the Voice of the Customer (VoC) approach to assess the needs of their members from a person-centered perspective. This method, which was borrowed from the field of industry to probe the clients’ needs, applies sets of qualitative research methods (including semi-structured interviews, video ethnography and participatory observations) to identify the needs of end-users, i.e. patients, family, clinicians and staff. Kaiser Permanente used these methods successfully to develop quality improvement programs and to improve existing programs to better meet people’s needs and deliver better outcomes [2, 3].

In June 2015, we applied the VoC approach for the first time outside of the Kaiser Permanente system, and also for the first time in the field of Parkinson’s disease. The VoC approach, as described in this paper, aimed to identify the needs of Dutch patients with Parkinson’s disease, in order to further optimize the care they receive.

METHODS

The VoC approach consisted of three steps: (1) capturing patient needs by means of semi-structured interviews with patients, relatives and healthcare providers in their private environment; (2) preparing a comprehensive summary of the contents discussed in the interviews; and (3) prioritizing needs in a consensus meeting, in which all parties participate.

For the first step, all Parkinson patients visiting one of the two hospitals in Nijmegen, the Netherlands, were identified using the hospital information systems. There were two inclusion criteria. First, patients needed to be diagnosed with Parkinson’s disease. For this purpose, the diagnosis in all participants was verified by a neurologist with experience in movement disorders, based on accepted international criteria. Second, patients had to live in one of three representative suburbs of the city of Nijmegen, the Netherlands. All identified patients fulfilling the inclusion criteria then received a recruitment letter with information about the VoC approach. Participants completed the informed consent form. They were asked which healthcare professionals they normally visited. All identified healthcare professionals who were working in the three suburbs were then invited for an interview. To adequately capture the voice of the patient, we aimed for inclusion of 24 patients and 12 healthcare professionals. These numbers were based on the prior experiences of Kaiser Permanente, where answers saturated when these sample sizes were used.

The recruited patients, sometimes accompanied or represented by their relatives, and the healthcare professionals were subjected to a semi-structured interview of approximately one hour. Interviews were always performed by two interviewers. During the interviews, the interviewers positioned the interviewee in an expert role. The interviewers posed questions, listened and observed, while creating an atmosphere that facilitated an open conversation and avoided socially acceptable answers. Interviewers were instructed to probe for clarification and examples when desirable. All respondents were asked about their positive and negative experiences with current care, and their opinion on which aspects needed improvement. The interviewed healthcare professionals were asked to answer these questions, both from their own perspective and from the perspective of their patient. The interviews took place at the home of the patient or the practice of the healthcare professional, and all were recorded on video.

To maintain focus and accelerate the analysis, all interviews were scheduled within one week. This required a relatively large pool of 12 interviewers. To diminish inter-rater bias, we developed specific interview guides for interviews with patients, relatives of patients and healthcare professionals. These guides were based on the experiences of Kaiser Permanente. Besides instructions for the interviewers, the guides did not contain a topic list. This was left out to let the interviews proceed as open as possible. They were presented and discussed in a training session for the interviewers. Subsequently, the interviewers carried out a test interview, to complement the preparation phase.

For the second step, the interviewers translated the completed interviews into patient needs. At the end of each day of the interview week, the interviewers came together to review their videos and discuss their findings. During these meetings, the interviewers drew conclusions as to the most frequently expressed patient needs. After the interview period, the interviewers made a comprehensive video that showed the main conclusions, combined with illustrative quotations by the interviewees. This video formed a comprehensive outline of the patient’s story, and aimed at serving as a tool to generate ideas for future improvement projects.

The third step was to prioritize the identified patient needs. During a consensus meeting with the interviewed patients and healthcare professionals, the most frequently expressed patient needs were presented on posters. After discussing the posters and viewing the comprehensive video, the patients and relatives prioritized the patient needs by allocating a maximum of three points to each of the different needs. They could allocate all their points to one need or divide these between two or three needs. The total number of points represented the importance of the topic.

The study has been presented to the institutional review board for ethical approval. The board concluded that this study does not fall within the remit of the Medical Research Involving Human Subjects Act. Even though this was not formally required, we did obtain our own informed consent from every participant, after the purpose of the project and the patients’ contribution was carefully explained.

RESULTS

In total, 89 patients were invited, of whom 23 agreed to participate (26% participation rate). Twenty of them were interviewed, of which nine had an interview together with their spouse. For three other patients, a close relative participated in the interview instead. Additionally, 81 healthcare professionals were invited for an interview. Eleven healthcare professionals were included (14% participation rate), leading to a total number of 34 interviews. Each interview lasted approximately 70 minutes. See Table 1 for more detailed information about the respondents.

Table 1

Overview of interviewed individuals

N	Group details
	Patients (n = 20) and relatives (n = 12)
20	Patients, of whom nine were accompanied by their relative during the interview
1	Spouse of patient
1	Son of patient
1	Friend of patient
	Healthcare professionals (n = 11)
2	Specialized Parkinson nurse
2	Social worker
1	Physiotherapist
1	Occupational therapist
1	Speech and language therapist
1	General practitioner
1	Elderly care physician
1	Home care worker
1	Neuro-psychologist

The interviewers extracted the 10 most frequently expressed patient needs from the interviews, which were subsequently prioritized during a consensus meeting. Patients were generally more concerned about the impact of Parkinson’s disease on their daily lives than about the bio-medical aspects of their disease. Their top unmet needs were: (1) more self-management; (2) better interdisciplinary collaboration between different healthcare professionals; (3) more time to discuss the future and possible scenarios; and (4) one healthcare professional as a single point of access, acting as a personal case manager, either to solve problems directly or to direct patients to the professional best equipped to address the problem at hand (see Table 2).

Table 2

Top 10 priorities of patient needs, as retrieved by the VoC approach

#	Item	Points	Illustrative quotes (translated to English)
1	Desire for self-management	22	“The three of us met: the neurologist, the nurse and I. They were talking to each other using technical terms, while I was just sitting there. I became a bit angry: they were talking about me, so I would like to understand what they were saying.”
			“Going to the hospital was compulsory; not because we felt the need to go at that moment.”
			“I want to decide myself if I need care. That is what I call self-management.”
2	Better collaboration between my different healthcare professionals	21	“I am seeing a cardiologist. I noticed this was not communicated to my neurologist. That makes me question: ‘This is about my life, and two people in the hospital are individually working on it. Why are they not working together?”’
			“I think specialists are named ‘specialists’ because they work in their own work field, of which they know almost everything, but they are very isolated from each other.”
3	More time for discussing the future	20	“I fear the future. I notice that I am thinking a lot about how the disease will progress: how will it be? How will my life look like?”
			“I have it for five years now. The neurologist told me: ‘up to now it seems that the disease progresses quite slowly. We can expect this trend to continue in the future.’ I feel the need to know this type of information.”
4	One healthcare provider who can act as a personal case manager	18	“Sometimes I have panic attacks. It helps if I can contact the nurse to talk about it. But if I call and I get an appointment in two weeks, it is useless. Then I do not need it anymore.”
			“I have a good relationship with the specialized nurse. She knows me quite well by now. I call this ‘warm care’. She has patience for me, and she recognizes me when we coincidently encounter outside the hospital.”
			“It would certainly help if there was somebody who said: ‘I want to help you during the whole process. You will encounter this and that.’ This makes you feel prepared.”
5	More knowledge of the disease	11	“Often home care nurses lack specific knowledge of Parkinson’s.”
			“Pharmacists lack detailed knowledge of the different types of medication.”
6	More support from my pharmacist	10	“There are three different brands of Madopar, so things sometimes go wrong when ordering medication. The attitude of pharmacists regarding this is frustrating.”
7	Increased focus on the needs of my spouse	9	“You do not have Parkinson’s alone. The whole family has Parkinson’s. It would be nice if this issue was given some attention.”
8	More contact with other patients	7	“I strongly feel the need to talk to people in the same situation.”
			“That is the best that can happen to you: you encounter someone who also has the disease. Then you do not need many words to explain what is going on.”
9	More provision of information	6	“If I look back, I think it would have been useful to be explained things straight away. Like, ‘okay, your father is diagnosed with Parkinson’s disease. Let’s sit down together with all the involved healthcare providers and explain what this will mean for you as a family member of a Parkinson patient.”’
10	Less fragmentation of healthcare	6	“It would be nice if I could see the same neurologist every time; the same nurse, the same therapist. They should then sit together once in a while and discuss my case as their mutual patient. If they had more contact with each other and did this, they would know who I am.”

DISCUSSION

The VoC approach is an innovative, person-centered and relatively fast way to reveal the most important needs of Parkinson patients. We found that the most urgent patient needs, report by themselves, concern the social, emotional or domestic domain of the patient.

Some of our findings confirm the results of previous research: a large European survey among 2068 patients revealed that only 11.6% of patients feels involved in treatment decisions [4]. This is in line with the desire for more self-management, similar to what we found, which includes the involvement in decision making. However, most other studies found different needs: the main results of the previously mentioned European survey found unmet needs in the diagnostic process [5], the diagnosis delivery [5] and access to allied healthcare professionals and specialized nurses [6]. Other studies reported a lack of information provision, emotional support, and multidisciplinary collaboration of healthcare professionals [7, 8]. The differences in identified patient needs may be due to the fact that most of the existing literature consists of the standard type of questionnaires that focus on the biomedical domain or the professional-patient relation. In contrast, the VoC method is a deep interviewing method that really places the patient in the expert role. This may have led to an accentuation of the social, emotional or domestic domain. For example, a key issue such as the desire to have one easily approachable healthcare provider who can act as a personal case manager, has not been described before. Sharing such personal matters with a stranger (an interviewer whom patients did not know) requires an open dialogue and an environment in which the interviewee feels sufficiently safe to share his or her deepest feelings. This might be the area where the VoC approach can add the greatest value, compared to more traditional methodologies like surveys or focus groups.

An important limitation of our research is the low participation rate of invited patients (26%) and healthcare professionals (14%), which might lead to inclusion bias. Additionally, no neurologist or movement specialist participated in the interviews. Since the VoC approach was performed as a quality improvement program without the primary intention to conduct research, no data about those who did not participate were collected.

The VoC approach used here revealed that the perception of “being healthy” is broader than simply achieving an acceptable level of symptoms. It also includes the ability to maintain a social life and participate in society. These new results should now be used to further optimize the care for patients with Parkinson’s disease.

CONFLICT OF INTEREST

The authors have no conflict of interest to report.