Assessing the Impact of Patient Advocacy on Individuals, the Health System and Society
The Center for Patient Partnerships directly documents the impact of advocacy services on patients through evaluation, field research, and synthesis of existing empirical studies – and we link this work back to practice through ongoing refinements to our own clinical model and by disseminating our findings. Center faculty have also focused on particular facets of health policymaking (for example newborn screening, an area where advocacy has proven particularly effective at shaping policies) so that we can better understand its influence and implications.
Complementing the ongoing evaluation of advocacy’s impact, the Center and its affiliates have a growing portfolio of additional research projects related to advocacy. These include:
- to understand existing variation in advocacy practices;
- to assess the impact of different advocacy models; and
- to focus the attention of scholars and policymakers on this research agenda.
Past & Ongoing Research
How Advocacy Touches Patients’ Lives
Although the prevalence of advocacy services is growing, literature about the efficacy and impact of these services is limited. Our current study “Patient Experiences with Serious Illness and Advocacy,” is an exploratory assessment of the impact of advocates (both formal and informal) on people with serious or life threatening illness and their caregivers.
Drawing on the experiences of former clients at CPP, it explores crucial questions about the nature and impact of patient advocacy. These include: (1) determining when and under what circumstances people with serious illnesses seek out advocacy and other forms of support from various sources, (2) examining how people proceed to seek advocacy and other forms of support; (3) ascertaining what expectations patients and their caregivers bring to their encounters with advocates and other formal support programs; (4) learning about how patients’ experiences with health care changed their expectations for advocates; and (5) identifying which elements of advocacy support were most useful and which were least useful for those who sought this service.
Child Advocacy, Parent Experience and Policy Influence
Testing Baby is the first book to draw on parents’ experiences with newborn screening in order to examine its far-reaching sociological consequences. This cautionary tale also explores the powerful ways that parents’ narratives have shaped this emotionally charged policy arena.
Newborn screening occurs almost always without parents’ consent and often without their knowledge or understanding, yet it has the power to alter many things including family dynamics at the household level, the context of parenting, the way we manage disease identity, and how parents’ interests are understood and solicited in policy debates.
Patient Advocacy & Mass Media
Mass media influences decision-makers of all kinds, and is thus a key element of and target for advocacy.
Our current project in this domain examines some of the unexpected but powerful pathways through which patient advocacy can alter policy discourse by shaping the content of mass media coverage.
In particular we explore the influence of parental advocates for expanded newborn screening (NBS). Our research draws on content analysis of media coverage of NBS over the past 30 years, in the U.S. and the Commonwealth countries. We find that greater engagement with parents as sources of information regarding NBS is associated with a depiction of newborn screening that gives considerably greater emphasis to the health benefits and considerably less attention to the ethical challenges and policy quandaries. Regional differences in media coverage are also associated with differences in state-level policymaking , most notably in terms of the expansion of newborn screening panels to report to parents on conditions that are not currently treatable.
Past work in this domain includes an analysis of childhood obesity as represented in the mass media.
Advocates Supporting Patient Choice
Center faculty and affiliates are collaborating with a national team of researchers on a three-year study that will provide the first experimental test of the potential for health advocates to assist patients with their choices among health care providers.
Supported by a grant from the Agency for Healthcare Research and Quality (AHRQ), this study compares the choices made by a group of consumers who are randomly assigned to an experimental website that contains a variety of quality metrics and patient commentary to the choices made by another group who are exposed to the same website while “accompanied” over the phone by an advocate trained at CPP. The two groups will be compared in terms of their understanding of the website, their understanding of different aspects of clinical quality, the ease and clarity with which they chose a clinician, and their overall sense of empowerment in medical settings.
Research Under Development
Compiling and Analyzing the Advocacy Literature
Center faculty, affiliates and students are currently collaborating on a meta-analysis of the peer-reviewed literature to assess what evidence there is that patient advocates improve care for their clients.
This peer review will draw on articles that have been accumulated in CPP’s Advocacy Archive. It will synthesize this literature to present the general magnitude and reliability of benefits linked to advocacy, as well as explore what is known about the attributes of advocates and advocacy programs that are associated with more favorable outcomes.
Public Advocates, Insurance Coverage and Health Reform
There is substantial interstate variation in the approaches states take to helping consumers resolve problems related to health insurance, as well as in the resources states devote to this assistance. This study would provide the first national assessment of how this variation affects the health care and well-being of the residents of these states.
It would do so using a new two-stage survey. The survey would first engage a representative sample of 20,000 Americans in the 28 largest states to ascertain the current prevalence of insurance problems. A second, detailed follow-on survey would explore the experience of roughly 3,300 residents of these same 28 states as they seek resolution for coverage problems and misunderstandings. We expect to learn important lessons about variation in consumer assistance programs and the variable impact these programs have on consumers. This research will build upon our past qualitative study of Consumer Assistance Programs, the results of which were published in Health Affairs in February 2013.