The future of (Parkinson) care

Name: Bastiaan R. Bloem
Organisation: Parkinson Center Nijmegen (ParC)
Abstract:

The world around is changing. This is best exemplified by the drastic changes that are happening today in the internet world: we have moved from Web 1.0 (one-way traffic, with read-only content on websites) to Web 2.0, where users can make active contributions and help to co-create content. In a similar fashion, health care should move to Health 2.0, perhaps better phrased as Collaborative Care or Participatory Medicine.

According to this new approach, patients are no longer passive objects, but become active subjects who contribute to their own health and disease management. At the same time, doctors and other health professionals will change from the traditional 'almighty' leaders, into coaches of patients and their families. And the traditional ‘institution-oriented’ organization of health care will increasingly move towards a world of virtual and dynamic health networks, with the patient's health problems as the leading path. As such, patients will become a full member of the multidisciplinary team that is needed to optimally treat and manage complex and devastating disorders such as Parkinson's disease or Alzheimer’s disease, or any chronic progressive disorder for that matter. The active role assumed by patients can take many forms: self-selecting their own health professionals, based on transparent information about the quality of care (based on quality indicators and consumer reviews); full access to their own medical records; ability to communicate easily with health professionals or other patients via web-based facilities; helping to make the right treatment choices via shared decision making; active participation in guideline development; and many more options.

Of course, this Participatory Health is not a world where the patient is solely in complete charge; patients themselves neither request this, nor is it necessary. But Participatory Health does represent a world where patients are being taken seriously, and where the power of the patients and their families is maximally exploited to gain optimal health profits. And web-based communities will also help health professionals to easily exchange ideas and experiences, thereby increasing the knowledge of the professional network. In The Netherlands, we have begun to implement several elements of Participatory Health into the disease management of families with Parkinson’s disease (1-3), and these new concepts are increasingly being developed together with the patients themselves (4). I will highlight some of these developments in my presentation.

References

  1. Nijkrake MJ, Keus SH, Overeem S, Oostendorp RA, Vlieland TP, Mulleners W, et al. The ParkinsonNet concept: development, implementation and initial experience. Mov Disord 2010 May 15;25:823-9.
  2. Munneke M, Nijkrake MJ, Keus SH, Kwakkel G, Berendse HW, Roos RA, et al. Efficacy of community-based physiotherapy networks for patients with Parkinson's disease: a cluster-randomised trial. Lancet Neurol 2010;9:46-54.
  3. van der Marck MA, Kalf JG, Sturkenboom IH, Nijkrake M, Munneke M, Bloem BR. Multidisciplinary care for patients with Parkinson's disease. Parkinsonism & Related Disorders 2009;15S3:S219-S223.
  4. van der Eijk M, Munneke M, Faber MJ, Bloem BR. Moving towards patient-centred healthcare for patients with Parkinson's disease. Mov Disord 2010;25 (Suppl. 2):S423.
Picture of the speaker