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Fri, July 1, 2011
Parkinson Disease: A Model for Community-Driven Research
As defined by the national Parkinson Foundation, “Parkinson disease is a brain disorder. It occurs when certain nerve cells (neurons) in a part of the brain called the substantia nigra die or become impaired.

Normally, these cells produce a vital chemical known as dopamine. Dopamine allows smooth, coordinated function of the body’s muscles and movement. When approximately 80% of the dopamine-producing cells are damaged, the symptoms of Parkinson disease appear.”

Parkinson disease (PD) does not discriminate and occurs in all populations regardless of sex, race, or socioeconomic status. It affects the whole family – and society as a whole – as the individual with PD experiences a loss of control over daily activities that could previously be taken for granted. The “simple” seemingly automatic and near effortless act of walking is complicated by hurdles including a shuffling gait, intermittent “freezing” of the foot and difficulty with balance. Tremors may be sporadic in their occurrence and intensity.

One’s speech may become soft, muffled and difficult to understand even by family members. Facial expression, an important aspect of non-verbal communication, may become flat or stiff. A stranger – whether a fellow citizen, retail clerk, waitress, or police officer – may assume the individual with PD is experiencing these signs as the result of alcohol, drug use and/or psychotic disorder. Increased tiredness and depression have also been associated with PD; however, it is not clear if these are included in the primary constellation of features of PD, or whether they are a result of the strain of living with PD.

Living with Parkinson disease can, to put it mildly, negatively influence one’s access to recreational and work opportunities and participation in what had been typical daily activities. It has a significant impact on communication within the family as well as interactions outside of the family.

There is no cure for Parkinson disease – yet. Current medical treatment, at best, provides palliative treatment by temporarily lessoning some symptoms. Not everyone with PD responds equally to medications in terms of potential benefits and concomitant negative side effects. Thus establishing the most appropriate medication regimen is a matter of balancing the trade-offs between positive and negative effects.

The estimated number of individuals in the U.S. who have Parkinson disease is 1.5 million, with an additional 60,000 – 70,000 individuals diagnosed each year. Up to 15% of individuals with PD are diagnosed before the age of 50, though typically the onset of symptoms does not occur before the age of 60. Parkinson disease affects 1 in 100 people over the age of 60. Medical, loss of work, and other economic costs are incurred not only by the individuals with PD, but also their families AND taxpayers. Medical costs have been estimated as $80/month (early stage PD) - $480/month (stage three) - $12,000/month (stage five). We know of no reports detailing the additional costs associated with the toll on individual and family economic and emotional resources, loss of work, change in lifestyle, and quality of life.

In Michigan, approximately 40,000 citizens live with the diagnosis of Parkinson disease (MPF). This estimate has not been updated since the 1990s. There are no statistics available on a Michigan state-wide basis concerning the number of new cases diagnosed annually, the clinical presentation and progression of PD, nor the demographic characteristics of those with PD.

Community Based Participatory Research

Community Based Participatory Research (CBPR) is a relatively new paradigm in public health research. This model embraces the collaboration of non-academic community members with academic researchers to address research questions of interest to the community.

Incumbent upon this practice is the pro-active involvement of community members in ALL aspects of the research: identification of the research question, research design, data collection, interpretation, analysis, and dissemination of results. This approach differs from the too common practice of researchers going into a community, obtaining data from community members, and exiting.

CBPR principles include respect of community members and academicians as research partners and recognition of expertise of all parties. A key element in promoting a culture of trust is open communication and mutual learning opportunities. As community members can learn about conducting scientific research, academicians can learn about community concerns, norms, and desired outcomes from research in the community.

In CBPR, the community may consist of any cohesive unit with a shared identity. In public health research, the community is often a geographic neighborhood, ethnic or language community within a prescribed area. This project may be one of a few CBPR studies in which a disability is the shared identity. Individuals with PD are often referred to – and treated – as “patients,” rather than “citizens,” “Michiganders,” or other non-pathologizing term even when outside of a clinical setting. With the advent of proactive community involvement at all levels of this project, the language used in formulating research questions, data collection tools, analysis and dissemination of results may illustrate community empowerment integrated at all levels of the research endeavor.

Preliminary Studies

There are a few geographical regions in the country that have instituted Parkinson disease registries. These include California, the Carolinas, Nebraska, Oregon, and Washington. In some cases, including California and Nebraska, registries are set up following statewide legislation requiring physicians, pharmacists, and other clinicians diagnosing and treating patients with PD to report cases of PD. In contrast, Washington’s registry is limited to those individuals with PD who are interested in participating in research. California’s registry is in the pilot project stage including data from targeted geographic areas. The Nebraska Parkinson’s Disease Registry is the only fully operational registry in the U.S.

Without a registry there are no mechanisms to accurately assess the number of individuals with Parkinson disease on a regional, statewide, or national level. For those receiving medical care for a clinical diagnosis of PD, most care is done on an outpatient basis and thus hospital records are inadequate assessment tools.
Though anecdotal reports suggest that young onset PD is increasing, without a registry there are no data to support or disprove this observation. A registry provides a basis for a more accurate assessment of the number of individuals with PD. It provides the tools for assessing demographic trends in PD including age of onset and diagnosis, potential risk factors including age, sex, ethnicity, geographic location, family history, and environmental exposures. In addition, it provides data for longitudinal studies addressing the progression of signs and symptoms of PD and response to treatment modalities.

The availability of these data will provide essential information to address epidemiologic studies examining risk factors for PD. In addition, they may provide resources into developing clinical trials for treatment. A registry can make a unique and significant contribution to our knowledge of PD and its causes. Identifying the risk factors and causes of PD are the first steps toward prevention, effective treatments, and cure.

The number and percentage of elderly in the US population is growing rapidly, and the economic and societal costs of diseases that affect aging populations are considerable. Far too little is known about the demographic trends of the incidence of Parkinson’s disease, and about which risk factors are important to disease development.

Parkinson Disease: a Model for Community-Driven Research

A new CBPR has been initiated that has been deliberately designed with a commitment to strategic empowerment for individuals with Parkinson disease (PD), their families, and allies.

“Patient Advocates – Speaking for Ourselves” is a relatively new paradigm in both public health and social work research for this model embraces the collaboration of non-academic community members with academic researchers to address research questions of interest to the community. Incumbent upon this practice is the pro-active involvement of community members in ALL aspects of the research: identification of the research question, research design, data collection, interpretation, analysis, and dissemination of results.

Project goals are focused on:
  1. Outreach and educational training to local PD support groups and
  2. Formulation of a Parkinson Disease Registry for the citizens of Michigan.
The initial building blocks of year one will serve as the foundation of the longer term project. Phase one includes a seminar series to PD Support Groups addressing the basics of “human subject research” with thoughtful consideration of analysis and distribution of research results and development of a report form for a Michigan PD Registry. Future funding avenues are woven throughout year one. Development of the Michigan Parkinson Disease Registry has been prioritized to answer the important question of “How many people in our state have Parkinson disease?” and additional demographic data and assure a long-lasting, purposeful community resource.

The project affords the unique opportunity for the community – whose shared identity is living with Parkinson disease – to proactively engage in research that directly impacts the community.

Specific Aims

The overall aim throughout this project is to be community-driven in every aspect of the project: to “walk the walk.” More than having “community-involvement” which is too often on a minimal and restricted level; we are advancing community-driven research. To be of the community, by the community, and for the community, entails that community members are proactively involved in all aspects of research: design, implementation, analysis, and distribution of results.

Aim 1: Basics of Research: Training for PD Community

The first aim is to empower individuals living with Parkinson disease to become full partners in PD research. By acquiring a working knowledge of the basics of human subject research, the expectation is that these learners will develop tools to actively drive PD research, appreciate the stages involved in research from design to reporting results, and improve recruitment strategies and the informed consent process.

Toward that goal, we have established that “The ABCs of Research: a Path toward Community Empowerment” seminar series will be offered at no cost to local PD support group members. The workshops are designed to provide a working knowledge of the steps involved in formulating, conducting and presenting results of studies involving “human subjects.” Upon completion of the seminar series, participants will be awarded a certificate of completion. Topics will include:
  • Introduction to Research
  • Formulating Questions
  • Research Methods
  • Recruitment
  • Informed Consent Process, IRBs and Protection of Research Participants
  • Analysis
  • Distribution of Results
  • Future Funding
  • Public Speaking
The skill of public speaking is an important asset in research. It comes into play when discussing research design with colleagues, recruiting study participants, conducting the informed consent process, and conveying study results to colleagues, media, and the public. Given the varying strengths and limitations of individuals with Parkinson disease, “public speaking” will encompass a continuum of modes of communication including verbal presentation to a group, interviews, written communication, dictation, and communication boards.

Aim 2: Michigan Parkinson Disease Registry

The second aim is to develop a reporting form to implement a Michigan Parkinson Disease Registry. In keeping with the overall aim, the PD Registry Working Group will be composed of the Project Co-Directors (Kathleen Russell, MSW, CSW and Katy Downs, MS) and 3 community members. The 3 community members will be from local support group (2 representatives) and the Michigan Parkinson Foundation (1 rep). The Registry Working Group will review other state’s PD Registries and identify data to collect. The group will address issues including who may have access to data and for what purposes, and where the registry should be housed. We believe this will be the first registry designed by community partners as full partners.


Upon completion of “The ABCs of Research: a Path toward Community Empowerment,” seminar participants will make a community television quality DVD: “Speaking for Ourselves.” The final product will incorporate personal stories and information about Parkinson disease and research.

The Registry Working Group will complete a reporting form to be utilized as a pilot testing instrument in the next phase of the Michigan Parkinson Disease Registry.

Unique Contributions to Community-University Research Partnerships

To be of the community, by the community, and for the community we are advancing community-driven research in all aspects of this project. This includes the original community initiated impetus for the design and implementation of a Michigan Parkinson Disease Registry and creating a learning environment as a tool of empowerment for community members to proactively engage in all aspects of research. Utilizing these tools we hope to get a better idea of those impacted by PD in our state, what needs remain to be served, and empower us all better to serve those needs in a meaningful way.

References accessed 3/21/08 National Parkinson Foundation accessed 3/27/08 The Parkinson’s Institute

The Parkinson’s Handbook, Dwight C. McGood, MD. 1990 W W Norton & Company, New York

Personal Communication, Kathleen Russell Parkinson’s Action Network Congressional Coordinator for Southeast Michigan, March 17 and March 23, 2008

Creating Partnerships, Improving Health: The Role of Community-Based Participatory Research, U.S. Department of Health and Human Services Agency for Healthcare Research and Quality AHRQ Pub.No. 03-0037 June 2003.

Cargo M and Mercer SL: The value and challenges of participatory research: strengthening its practice. 2008 Annu. Rev. Public Health 29:325-50

Minkler M: Ethical challenges for the “outside” researcher in community-based participatory research. 2004 Health Education & Behavior, v31 (6): 684-697

Green LW, Ethics and community-based participatory research: commentary on Minkler. 2004 Health Education & Behavior, v31 (6): 698-701

Israel BA, Schulz AJ, Parker EA and Becker AB. Review of community-based research: Assessing partnership approaches to improve public health. 1998 Annu. Rev. Public Health. 19:173-202

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