Patient Centered Research: “Facing ambiguity and touching discovery”

Echo L. Warner MPH

PhD Student, University of Utah College of Nursing

Photo courtesy of the CDC

History of PCR: Healthcare has been informed, historically, by empirical evidence-based medicine. Evidence-based medicine is focused on clinical guidelines, protocols, and best practices that are identified using population based approaches (i.e., the best approach for the biggest group of people) (Romana, 2006).  However, a paradigm shift has occurred over the last few decades as healthcare providers and administrators have begun to realize the integral nature and value of patient centered care. In contrast to evidence-based medicine, patient centered care and research prioritizes the voice of the patient and supports clinical discretion (Romana, 2006). Dr. John Noble first described the need for patient centered research (PCR) in 1989 (Noble, 1989). Noble (1989) described PCR as an approach to discovering new knowledge and identifying strategies to improve the patient experience by engaging patients and clinicians in the study of the social, psychological, and individual factors that influence the healthcare experience (Noble, 1989).

PCORI PCR Focused Funding Announcements	Funds Available	Application Dates
Patient-Powered Research Networks (PPRN) Research Demonstration Projects	$18 million	9/30/2015
Improving Methods for Conducting Patient-Centered Outcomes Research- Cycle 2	$12 million	11/3/2015
Engagement Award: Knowledge, Training and Development, and Dissemination Awards	Varies	10/1/2015

Example of PCR:

In an effort to provide the best and most appropriate patient centered care there has become an increasing focus on PCR over the last few decades. In 2010, the Obama administration devised the Patient Centered Outcomes Research Initiative (PCORI), in an effort to allocate funding toward studying what kind of healthcare is most effective for certain patients. PCORI also prioritized four domains of research: improving healthcare systems, communication and dissemination, health care disparities, and accelerating patient-centered and methods research (Sox, 2012). Specifically, the goal of this priority is to develop an informed community of patients, a focus on patient preferences, and development of innovative methodologies that engage and emancipate patient perspectives to improve the healthcare experience (Sox, 2012). A major focus of PCR is patient involvement from conception and design of a study throughout interpretation and dissemination. PCR focuses on questions and outcomes that matter to patients. Currently the PCORI initiative is engaged in funding innovative PCR. Examples of funded PCR studies are described on the PCORI website. In an effort to adhere to their mission of patient centeredness, PCORI also publishes a public blog encompassing a range of topics from new funding announcements to research results (Table 1).  PCORI is one example of the burgeoning new research that is patient-centric and that aims to improve the patient experience from birth through death.

Challenges of PCR: It has yet to be examined whether and how PCR improves upon prior research approaches. In other words, research is needed that measures the effectiveness, cost-efficiency, and ultimately the power of PCR to change patient experiences while still preserving utmost clinical care. That being said, similar to other research methods and frameworks, PCR has its drawbacks. Challenges to conducting PCR include foundational differences between researchers and patients including focusing on outcome metrics that are not prioritized among both groups equally, limited and differing availability and desire to engage in PCR, and language barriers (Perez, 2013). Moreover, unintended consequences of PCR such as unequal power relations between researchers and patients may limit the depth and breadth of PCR. Lastly, the long-term impact of PCR is unknown. Additional research is needed to more fully understand the practical application of PCR and how this type of research approach influences patient care.

Photo courtesy of the CDC

Future Directions: In his TEDx talk at the University of Minnesota, The Future of Patient-Centered Care, Dr. Dave Moen, MD describes his journey from working as an emergency medicine physician to rediscovering the value of patient centered care while caring for victims of domestic violence. Like Dr. Moen, as healthcare professionals and researchers, we are all on a journey to understand the future of patient centered care, and the PCR that will ultimately guide the implementation of this care. In the future, we can undoubtedly learn more by exploring new research methodologies that extend beyond the bounds of evidence-based medicine. In other words, by directly involving patients in PCR, we may be more fully able to improve the patient centered care experience. While the transition from evidence-based medicine to patient centered care represents an evolving change in the way that healthcare providers and patients make decisions, we are still left with unanswered questions about PCR.

References and Additional Recommended Links:

Noble J. Patient-centered Research: Through the Looking Glass in Search of a Paradigm. Journal of General Internal Medicine. 1989;4:555-557.

Perez B, Cummings L, Schrag J, Mead H, Jewers M. Facilitators and Barriers to Providing Patient-Centered Chronic Disease Care to Patient Populations at Risk for Health and Health Care Disparities in Safety Net Settings. America’s Essential Hospitals. 2013.

Romana H. Is Evidence-Based Medicine Patient-Centered and Is Patient-Centered Care Evidence-Based? Health Services Research. 2006;41(1):1-8.

Sox H. The Patient-Centered Outcomes Research Institute Should Focus on High-Impact Problems That Can Be Solved Quickly. Health Affairs. 2012;31(10):2176-2182.

http://www.pcori.org/assets/2014/01/PCORI-Facilitators-Barriers-Providing-Patient-Centered-Chronic-Disease-Care-120613.pdf

http://www.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofContents/Vol-16-2011/No2-May-2011/Overview-and-Summary-Patient-Centered-Care.html

This work is by Echo Warner is licensed under a Creative Commons Attribution 4.0 International License

Analysis of Shifting Paradigms: Provider-Centered to Patient-Centered Care & Research

Doctors Know Best, but Doctors Sometimes Do NOT Know Best

—THE NEW YORK TIMES, 2012

In current clinical practice, providers focus on assessing disease severity and evaluating drug and treatment effectiveness. There is less emphasis on patient involvement in decisions about care or on the specific needs of patients that affect their quality of life. Despite expensive, highly specialized, and technologically advanced care practices; this disease-centered approach to care has resulted in poor quality outcomes. In terms of research, knowledge gained from clinical research does not directly answer the primary clinical questions of what is best for the patient at hand.

Physician centered practice developed from a system that allowed mounting utilization of diagnostic testing, prescriptions, hospitalizations, and referrals without regard for specific patient needs or desires. It is considered “depersonalized medicine” or “illness- oriented care”, with the aim to treat the illness, not the patients with the illness. The long held assumption that “Dr. knows best” is now being challenged as payers and consumers demand better bang (better outcomes) for the buck.

Assumptions
Provider Centered Care	Patient Centered Care
Disease focused	Patient focused
Physicians know best:  the experts	Physicians collaborate: the enablers
Physician oriented outcomes: What is best for the disease or illness	Patient oriented outcomes: What is best for individual patient
The best intervention for the typical patient	The best intervention under what conditions works for which patient
Patients as passive: complying with physician’s orders	Patients as active: “Nothing About Me Without Me”
Patients voice is ignored	Patient voice guides clinical decision making
“What’s the matter” with patients	“What matters” to patients
Fee for service, Shorter, more frequent visits, less reimbursement	A variety of qualified primary care providers – including nurse practitioners
Consumers unaware what healthcare $$ buys	Consumer informed – demanding better deal
Provider Centered Research	Patients Centered Research
Absolute efficacy	Comparative effectiveness
Homogeneity	Heterogeneity
Generality	Individualizations
Statistical significance	“What matters” to patients

“Nothing About Me Without Me.”

--PATIENT'S VOICE

Consumers are demanding that the role of the healthcare professional should change “from experts who care for patients to enablers who support patients to make decisions.” Rapid advances in technology create a forum for improved health literacy and curiosity among the public. Health care consumers no longer are interested in playing passive roles, but rather expect to be listened to, respected and treated with dignity and earnestness. Published reports from regulatory agencies call out the health care industry to either improve morbidity and mortality or face consequences of limited reimbursement and penalties. Comparative effectiveness research (CER) moves scholarship in a direction that engages the population as partners, addressing diversity and creating personalized approaches. A consumer movement advocates that patient-centered care become a goal of most healthcare practitioners and researchers worldwide.

Effective partnership with patients has been reported being associated with a large variety of positive patient outcomes, such as adherence to treatment, improved health, and satisfaction. Today, patient-centered care is thus termed as one of six indicators of quality care. Patient-centered care requires more than a respectful attitude toward patients, it requires personalized clinical interventions.  It is not necessarily giving patients what they want regardless of values or costs, but rather requires knowing the patient as a person and engaging the patient as a partner in his or her own care. 

Similarly, patient-oriented research should not be based on the evaluation of medical interventions in the average patient, but “on the identification of the best intervention for every individual patient. Patient oriented research focuses on the study of heterogeneity and places greater value on observations and exceptions-especially as they occur in real life versus under experimental conditions”. The outcome measures should shift from what are most important to the doctors to what are most important to the patients.  “A difference, to be a difference, must make a difference”. The Patient Centered Outcomes Research Institute (PCORI) is a corporation authorized under the Affordable Care Act of 2010 that incorporates patient-centered principles in their goal.

Key drivers of this paradigm shift:

 

      Personalized medicine and tailored therapeutics;

      Advances in pharmacogenomics and technology;

      Medical costs forecasted to be 20% of GDP in 2020;

      Pressing shortage of primary care providers;

      Growing chronic conditions and increased medical complexity;

      Affordable Care Act- 16% of citizens uninsured

      

“Be Careful Not To Assume”  

  --Légaré et al., 2010

Determining what patients want does not require complex scales or sophisticated statistical tests.   Instead, providers must move from “what’s the matter” with our patients to “what matters” to our patients.  Often what the patient craves is a listening ear, compassionate interactions, access to information, and attention to their care.  Other factors such as level of adherence to medication, degree of tolerance to an adverse effect, past experience, and health objectives can have a decisive influence on the patient’s preferences. When more engaged with care, patients and families can help prevent drastic mistakes or oversights, such as identifying a wrong drug or dose they get from the pharmacy or notifying a doctor about a strange medication side effects.

Quality Equals Reduced Cost, Better Outcomes and Patient Satisfaction

The National Quality Strategy (NQS) promotes quality health care in which the needs of patients, families, and communities guide the actions of all those who deliver and pay for care; there are three broad aims: Better care; healthy people/healthy communities; and affordable care .  To advance these aims, they propose six priorities, of which “ensuring that each person and family is engaged as partners in their care” is one that pertains to patient centeredness. This priority is based on the latest research, input from a broad range of stakeholders, and examples from around the country and has great potential for rapidly improving health outcomes and increasing the effectiveness of care for all populations.

Healthcare Providers: "Nice, But Not Necessary"

Patients: "That's What I'm Paying You For"

--NURS 7106-001

It is important to explore tensions that lie between the margins of traditional medical models and stakeholder engagement models. As patients advocate for better care, providers may feel justified in taking a patriarchal stance given level of education and training. There has to be a change in how health care providers are educated in order to make this shift. Not only are schools of medicine and nursing going to need to teach how to recognize and treat diseases but also they are going to have to be innovative in their curriculum in order to teach their students how to enable their patients.

Some patients may expect the provider, who has the expertise, to take the lead in patient care. This expectation is summed up by the idea of "that's what I'm paying you for". If patients are to be taking charge of their own care, there needs to be a change in expectations. Responsibility should be shared in appropriate ways. The goals of the provider may be disparate from those of the patient when there is a misalignment in worldviews between provider and patient. A common challenge is one of respecting religious/cultural values. It is important to honor the patient's wishes as part of providing evidence based care.

There are myths about patient-centered care models - such as it is more expensive, takes more time, and really falls into that "nice but not necessary" category. As more evidence accumulates, these myths will be challenged. However, time constraints pose a real threat in the current environment. Patients or family members may be afraid to request something of the provider because they feel like they are rushed or the provider does not have time for them. Transparent communication about the time constraints and the need to schedule multiple appointments, using other team members as indicated, and prioritizing the patient's concerns can occur up front and mitigate this tension.

Fundamentally, a key challenge going forward will be the ability to demonstrate that positive patient-centered outcomes correlate with positive general health outcomes. One elephant in the room is reimbursement. Primary care provider (PCP) visits do not generate high levels of reimbursement so providers compensate by seeing as many patients as they can per day. Some would argue that to keep afloat until the major stakeholders - insurance and CMS gets behind this—patient centered care is not possible. New payment models are coming however –as soon as 2015 for patients with complex chronic conditions.

Patient-Centered Care is NOT Only the Job of Nurses,

But Will Transcend Across Disciplines.

--NURS 7106-001

Patient-centeredness must transcend across disciplines. Achieving this level of collaboration poses the greatest challenge. As care becomes more focused on populations, across the episodes of care and including prevention, interdisciplinary team care will become the norm and the entire team will need to partner with patients and families.  Not only will disciplines need to be able to communicate better, but also specialties will need to be able to communicate better with the primary care team. All will be challenged to communicate differently in a patient-centric model.

References

Boult, C., & Wieland, G. D. (2010). Comprehensive primary care for older patients with multiple chronic conditions:“nobody rushes you through”. JAMA, 304(17), 1936-1943.

Clayton, M. F., Latimer, S., Dunn, T. W., & Haas, L. (2011). Assessing patient-centered communication in a family practice setting: how do we measure it, and whose opinion matters? Patient Education and Counseling, 84(3), 294-302. doi: 10.1016/j.pec.2011.05.027

Epstein, Ronald M, Fiscella, Kevin, Lesser, Cara S, & Stange, Kurt C. (2010). Why the nation needs a policy push on patient-centered health care. Health Affairs, 29(8), 1489-1495.

Findley, L.J., & Baker, M.G. (2002). Treating neurodegenerative diseases. British Medical Journal, 324(7352), 1466-1467.

Godlee, Fiona. (2012). Outcomes that matter to patients. BMJ, 344.

Institute of Medicine Committee on Quality of Health Care in America. (2001) Crossing the quality chasm: a new health system for the 21st century. Washington (DC): National Academies Press (US).

Katon, W., Russo, J., Lin, E. H., Schmittdiel, J., Ciechanowski, P., Ludman, E., Von Korff, M. (2012). Cost-effectiveness of a multicondition collaborative care intervention: a randomized controlled trial. Archives of General Psychiatry, 69(5), 506-514. doi: 10.1001/archgenpsychiatry.2011.1548

Marshall, M., & Bibby, J. (2011). Supporting patients to make the best decisions. British Medical Journal, 342(d2117), 10.1136.

Picker Institute. (2008). About the patient-centered care improvement guide. Retrieved from http://www.patient-centeredcare.org/inside/abouttheguide.html

Rickert, J. (2012). Patient-centered care: what it means and how to get there. Retrieved from http://healthaffairs.org/blog/2012/01/24/patient-centered-care-what-it-means-and-how-to-get-there/

Sacristan, J. A. (2011). [Patient-centered medicine and comparative effectiveness research]. Medicina Clínica (Barc), 136(10), 438-440. doi: 10.1016/j.medcli.2010.11.014

Sacristan, J. A. (2013). Patient-centered medicine and patient-oriented research: improving health outcomes for individual patients. BMC Medical Informatics and Decision Making, 13, 6. doi: 10.1186/1472-6947-13-6

The National Quality Strategy. (n.d.). The national quality strategy overview. Retrived from http://www.ahrq.gov/workingforquality/toolkit.htm

Van der Eijk, M., Nijhuis, F. A., Faber, M. J., & Bloem, B. R. (2013). Moving from physician-centered care towards patient-centered care for Parkinson's disease patients. Parkinsonism & Related Disorders, 19(11), 923-927. doi: 10.1016/j.parkreldis.2013.04.022

Wynia, M., & Matiasek, J. (2006). Promising practices for patient-centered communication with vulnerable populations: examples from eight hospitals. The Commonwealth Fund, 1-94.

Key Links and Resources

1.        Agency for Healthcare Research and Quality. (n.d.). Working for quality. Retrieved from http://www.ahrq.gov/workingforquality/index.html

2.        Agency for Healthcare Research and Quality. Retrieved from http://www.ahrq.gov/research/findings/factsheets/patient-centered/ria-issue5/index.html

3.        Patient-Centered Outcomes Research Institute. Retrieved from http://www.pcori.org/

4.        Wen, L. (2012). From doctor-centered to patient-centered care. Psychology Today. Retrieved from http://www.psychologytoday.com/blog/the-doctor-is-listening/201211/doctor-centered-patient-centered-care

5.        Zickmund, S. (n.d). Incorporating stakeholder engagement into VA research: What can we learn from the patient-centered outcomes research institute (PCORI)? Retrieved from http://www.hsrd.research.va.gov/for_researchers/cyber_seminars/archives/777-notes.pdf

6.        Institute of patient-and family centered care center at http://www.ipfcc.org/advance/topics/videos.html

7.        The National Quality Strategy (NQS): six priorities at http://www.ahrq.gov/workingforquality/toolkit.htm

8.        The Doctor is Listening by Leana Wen. (2012, November).  Psychology Today at http://www.psychologytoday.com/blog/the-doctor-is-listening/201211/doctor-centered-patient-centered-care

9.        Patient- and Family-Centered Care: Why it Matters and How to Practice It. At https://www.youtube.com/watch?v=7g-5I7DO1rQ&feature=related   

10.    Patient-Centered Care: What It Means And How To Get There at http://healthaffairs.org/blog/2012/01/24/patient-centered-care-what-it-means-and-how-to-get-there/

11.    The Values and Value of Patient-Centered Care. At http://www.annfammed.org/content/9/2/100

12.    The Ideal Medical Practice Model: Improving Efficiency, Quality and the Doctor-Patient Relationship at http://www.aafp.org/fpm/2007/0900/p20.html

13.    About the patient-centered care improvement guide at http://www.patient-centeredcare.org/inside/abouttheguide.html

14.    The Trouble With ‘Doctor Knows Best’ at http://www.nytimes.com/2012/06/05/health/views/essay-urging-doctors-to-do-less-may-fall-on-deaf-ears.html?_r=0

15.    Patient-Centered Care Improvement Guide at http://planetree.org/wp-content/uploads/2012/01/Patient-Centered-Care-Improvement-Guide-10-28-09-Final.pdf

Created by Participants in Nursing 7106 Context for Advancing Science (and Improving Health)

University of Utah College of Nursing PhD Program Summer 2014 

Submitted by: By Sara Hawkins RN MSN & Rumei Yang RN MS

(Lead Authors)

What is the new research paradigm referred to as Team Science?

MULTIDISCIPLINARY TO TRANSDISCIPLINARY TEAM SCIENCE AND BEYOND

What is the new research paradigm referred to as Team Science? Since health care problems are often complex and may be difficult to understand and improve via a one investigator or single discipline approach, a team science approach is advantageous and necessary for advancing science. Different disciplines can integrate their expert knowledge in designing a research study in order to address a complex health problem so that a positive comprehensive outcome is achieved. The degree of the complexity of a given problem, the desired outcome and level of analysis drive the depth and complexity of team science. The prototypes for team science have progressed from a multidisciplinary approach to an interdisciplinary approach to the emerging paradigms that include transdisciplinary and patient-engaged teams.  

TYPES OF RESEARCH APPROACHES

In order to illustrate how team science can be conducted, the class was given a group assignment to develop a study using each one of the study designs discussed in class. The research topic involved the role of nutrition in assisting older adults with cancer to maintain their weight while undergoing chemotherapy.

Multidisciplinary Research: Knowledge that is drawn from diverse disciplines but research questions and methods stay within the distinct boundaries of each discipline. Multidisciplinary research may consist of “multiple silos" or “parallel play” research. Members of different disciplines consult with one another and at the same time contribute their independent perspectives. 

Common Assumptions: Each discipline needs to recognize the limitations of their perspective; disciplines can hold contrary assumptions about the appropriate questions to be asked or the nature of the phenomenon under investigation. Cross-disciplinary understanding may result as the team members recognize the relevance of others' findings.

Theoretical Framework & Analysis: 

Research questions are constructed from each disciplinary theoretical framework, constructs, and world view. The analysis is done independently from the perspective of each individual profession. The study is done in parallel though the research questions to be answered are independent of each other but contribute to the overall study aims.

  

Example of a Study using Multidisciplinary approach:

Aims:  The goals of this research study are to describe and explore the changes in the nutritional and functional status of older adults who are receiving chemotherapy

Methods: Mixed methods, both quantitative & qualitative descriptive study

Research Team & Area of Interest:

RN/ PI: Quantitative: gather data on physical function performance status, instrumental activities of daily living, functional status, a mini-nutritional assessment (albumin/pre-albumin), and frailty assessment pre and post chemotherapy.

Dietician: Ask for diet diary, evaluate & look through the medical record to measure weight change, determine kilocalories, micronutrients and macronutrient, dietary changes over time (i.e., diet ordered, kilocalories intake over time)

Oncologist: Measure the dose of chemo, toxicities (including nausea and vomiting), and dose or treatment delays

Geriatric anthropologist: Qualitative interviews: How being a cancer patient undergoing chemotherapy has affected the meaning of food and eating habits (including social interaction r/t food). How eating has changed during the cancer diagnosis, conducts interviews on dietary likes/dislikes, social effects.

Pharmacist: Look at drug dose, drug interactions and effects on appetite, anti-emetics that may improve appetite depending on drug interactions with specific chemotherapy protocol

Interdisciplinary Research: Analysis, synthesis and harmonizing of links between disciplines into a coordinated and coherent whole, integrative and reciprocally interactive approach that synthesizes diverse disciplinary perspectives. In interdisciplinary research two or more disciplines mutually conduct research guided by a structure that reflects a blurring of disciplinary boundaries in the integration of perspectives of each involved discipline.

Common Assumptions: Ideally suited to complex and real word problems, individually each discipline is inadequate to solve the phenomena of interest, and more importantly interdisciplinarity assumes disciplinary perspectives are partial and biased.

Theoretical Framework & Analysis: Bridge epistemologic gaps between disciplines and building on theories posited by all disciplines involved.

Example of a Study Using an Interdisciplinary Approach: 

Aims:  An interdisciplinary approach to maintaining healthy weight in the elderly patient experiencing chemotherapy

Key disciplines: Nursing, Pharmacy, Dietitian, Behavioral Health Specialists, Physician

Methods: Qualitative with interviews with caregivers; Baseline data on patients

Insights and lived experience with regard to this patient problem from caregivers perspective.  The questions will be crafted by a nutritionist, nurse, social worker, and medical oncologist.  Each question will ensure integration among the disciplines.

Transdisciplinary Research: Integration of natural, social and health sciences, holistic approach, creates a common conceptual-theoretical-empirical structure for research.  There are no boundaries between disciplines; in fact it may result in a new integrated discipline such as neuroscience.

Common Assumptions: Disciplinary boundaries must be dissolved in order to develop novel methodologies, traverses all disciplines, concepts are transdisciplinary in nature, and the knowledge in between disciplines is as important as those within the disciplines.

Theoretical Framework and Analysis: One theoretical framework is developed which crosses all disciplines. The Socio-ecological Framework provides one model for the transdisciplinary approach

Example of a Study using a Transdisciplinary Approach:

Research Question: How can older adults undergoing chemotherapy maintain weight through nutrition?

Team: Aging Services, City planning, Geriatric Oncologist, Nutritionist, Gerontologist, Dentist, Oncology nurse scientist, Geographer

Factors: taste changes, nausea, mucositis, lack of energy to prepare meals, lack of support system, lack of availability of food, lack of accessibility to food sources, e.g. transportation

Research Design: Descriptive study on how these factors affect older adults' nutrition & weight

Methods One model would be created but each discipline might contribute as follows:

·         Geography- GIS mapping

·         Aging services & city planning- explore existing resources and what are lacking (gap analysis)

·         Dentist- Assessment tool to assess oral health

·         Nutritionist- history, biomarkers, monitoring intake, weight

·         Geriatric oncologist & nurse scientist- type of chemo, clinical factors, antiemetic intervention efficacy

Patient Engaged Research: focuses on patient and family engagement in research to help inform the research questions, study design, and interpretation of results.

Common Assumptions: The whole patient needs to be considered, the patient/family/community all contribute to research, the patient is representative of the community as a whole.

Theoretical Framework and Analysis:  Patient engagement is conceptualized to include self-awareness, clinical alliance, tool for health self-management, citizen empowerment and effective disease self-management. Reference:  http://www.jopm.org/evidence/reviews/2014/06/11/the-challenges-of-conceptualizing-patient-engagement-in-health-care-a-lexicographic-literature-review/

Example of a Study Using Patient-engaged Research Approach:

Research Title: Using technology to delivery personalized meal plans for the older adults who receiving chemotherapy

Rationale: Even though older adults may have technology challenges, there is study reporting that old people are willing to use technology to get personalized care. Remote technology has interactive features that will allow older adults to have timely information regarding their care plan meanwhile reduced travelling and caregiver burden. 

Aims:  Engage patients, families or caregivers in the research design and implementation –One example is to conduct focus groups but this is a low level of engagement. A better approach is

to build partnerships with medical and non- medical stakeholders in the research design and implementation. One focus might be to describe the barriers to, facilitators of smartphone use as an approach to engage patient and family or caregivers in the personalized meal plan in older adults who receiving chemotherapy

Methods: Mixed Methods: two stage 

·         Focus group with older adults receiving chemotherapy to determine what current nutritional interventions they are doing and identify unique dietary needs of this population. Additionally the focus group will be asked regarding their use of technology (internet, smart phones, and tablets).

·         After needs are identified, an intervention study will be designed by all members of the research team including nutritionist, case management nurse, social worker, medical oncologist, as well as members of the focus group. 

What is noteworthy about the examples is the team members may be the same but how they work together as team scientists is quite different!

CHALLENGES OF THE NEW PARADIGM

Conflict, controversy, tension between the paradigms 

Beside group dynamic challenges can occur when working with researchers that hale from several different disciplines. There are some other potential conflicts that can arise when team science evolves to an interdisciplinary, transdisciplinary or patient-engaged approach. Historically infrastructure and incentives in academia have rewarded “independent investigator-initiated” research. Conflicts can arise from ambiguity among the disciplines related to integrated research approaches; unclear expectations and norms; differences in language and terms used to describe similar phenomena; engaging with unfamiliar would-be competitors in an unsupportive environment; confusion in identity for securing grants and sharing funds ;and  the devaluation of multi-authorship publications toward tenure. . 

Barriers to adoption of new models

A patient-engaged research approach requires patient involvement which is becoming paramount to conducting health care research; however there can be barriers to sustaining such research. Currently there is funding and incentives for patient-engaged projects; however there is a concern about how such research can be sustainable once the funding and incentives expire. There can also be disagreements between academia, private industry, and consumers in identifying which projects should be funded as a priority in improving our nation’s health. Other potential barriers pertain to proprietary rights to research innovation. In order to conduct rigorous and ethical transdisciplinary or patient-engaged research, a good infrastructure and shared norms need to be in place. Training and practices that incorporate ethical principles, group cohesiveness strategies and a commitment to learning from mistakes is essential. 

POTENTIAL IMPACT 

The potential impact of research conducted within the new transdisciplinary paradigm can be significant. Each different discipline brings a diversity of research methods based on theoretical frameworks in which to generate hypothesis that would not be possible via an interdisciplinary approach. Levels of analysis between disciplines can be bridged to bring about conceptual theories that are utilized to improve health interventions. Involving patients as stakeholders in research can have an effect on designing interventions that are practical and acceptable, eliminate health disparities, decrease gaps in knowledge and promote the efficient use of health care resources.

FUTURE DIRECTIONS AND QUESTIONS

The new paradigm of team science that includes transdisciplinary and patient-engaged research is still evolving.  The Affordable Care Act of 2010 established the Patient-Centered Outcomes Research Institute (PCORI) in order for health care research efforts to be truly patient driven and focused. PCORI research can be conducted via a transdisciplinary approach as it encompasses many different stakeholders from many different disciplines with the same goal: to improve the health of the Nation. Future directions of team science should include research that focuses on preventing disease, improving health care systems, disseminating and implementing research into practice and decreasing health disparities. There is no doubt that mistakes and new questions will arise as research is conducted in the new paradigm; however a key component to success is prompt identification and resolution of such concerns and never losing sight of the intended goal of the research.

RECOMMENDED READINGS OR LINKS FOR MORE INFORMATION

Relevant Readings

ü  Fawcett. Thoughts about multidisciplinary research found @ http://www.ncbi.nlm.nih.gov/pubmed/24085679

ü  Hall. Feng. moving the science of team science found @ http://www.ncbi.nlm.nih.gov/pubmed/?term=hall+and+feng+and+moving

ü  Nash. Transdisciplinary training found @ http://www.ncbi.nlm.nih.gov/pubmed/18619393

  

ü  Interdisciplinary research in Hartford Program found @ http://www.ncbi.nlm.nih.gov/pubmed/22881481

ü  PCORI-Patient-and-Family-Engagement-Rubric found @ http://www.pcori.org/assets/2014/02/PCORI-Patient-and-Family-Engagement-Rubric

ü  pcori.agenda found @ http://www.pcori.org/assets/PCORI-National-Priorities-and-Research-Agenda-2012-05-21-FINAL1.pdf

Some Other Useful Links

http://www.teamscience.net/index.html

http://sites.nationalacademies.org/DBASSE/BBCSS/CurrentProjects/DBASSE_080231

“The Science of Team Science: Dr. Stephen Fiore”  www.youtube.com/watch?v=R1FnxSvjoh0

                                                                                                                              

Created by Participants in Nursing 7106 Context for Advancing Science (and Improving Health)

University of Utah College of Nursing PhD Program Summer 2014 

Submitted by: 

Tracy A. Ruegg MS, CNP, AOCN and Meghan Routt MSN RN GNP/ANP, AOCNP

(Lead Authors)