An empowerment-based approach to developing innovative e-health tools for self-management

Abstract

E-health is seen as an important technological tool in achieving self-management; however, there is little evidence of how effective e-health is for self-management. Example tools remain experimental and there is limited knowledge yet about the design, use, and effects of this class of tools. By way of introducing a new view on the development of e-health tools dedicated to self-management we aim to contribute to the discussion for further research in this area. Our assumption is that patient empowerment is an important mechanism of e-health self-management and we suggest incorporating it within the development of self-management tools. Important components of empowerment selected from literature are: communication, education and health literacy, information, self-care, decision aids and contact with fellow patients. All components require skills of both patients and the physicians. In this discussion paper we propose how the required skills can be used to specify effective self-management tools.

Keywords

e-health empowerment mechanism self-management skill

Introduction

The number of people with chronic conditions continues to rise, while the number of healthcare professionals caring for those patients is expected to decrease^1,2. At the same time, patients are becoming more critical, better informed and more participative³. They are increasingly expected to take a more active role in the management of their disease by engaging in self-management activities^4,5. The urgent need for self-management is reflected in a range of ongoing initiatives, as for instance, in the Netherlands^6,7.

E-health is seen as one of the important support tools for patients and professionals alike^6,8–10. Although the number of e-health tools to support self-management is growing^11–14, the development of these systems is not always based on the research literature and, consequently, the theoretical basis of these systems is limited, or even lacking¹⁵. Most tools are still in the experimental phase and there is no body of knowledge yet about the design, use and their effects. As we have argued elsewhere¹⁶, there is currently little evidence that e-health tools for self-management draw on patient empowerment principles.

This discussion paper aims to add to the theoretical foundations of the design principles of e-health tools dedicated to self-management. It addresses this issue from a new perspective and aims at widening the discussion for further research in this area. As a starting point, we consider that patient empowerment is an important mechanism of self-management. We suggest that the different components of empowerment, alongside the required skills of patients and professionals, are the building blocks for the design of e-health tools.

The paper is organised as follows. A set of six components of empowerment is first identified from the literature. Subsequently, characteristics of self-management with respect to patient’s skills and the physicians’ skills are then derived. We further postulate on how design principles can be derived from the skills into a pathway of four practical steps. Finally, we elaborate on how to test this model and bring it into practice.

New perspective in designing e-health tools for self-management

Components of empowerment

A set of six components of empowerment has been reported in the literature on patient empowerment⁸.

Communication: This consists of facilitating patient communications with health professionals.

Education and health literacy: To ensure that people have the ability and motivation to gain access to, understand and use information in ways that promote and maintain good health. Health education is also a way of raising awareness and stimulating self-criticism.

Information: Access to personal medical information furthers patient control in the management of their health. Good-quality, personalised health information can balance the physician-patient relationship by reducing the knowledge asymmetry that has historically formed within this relationship.

Self-care (support): In many routine activities of daily living (e.g. nutrition, physical activity), patients themselves already engage in health management.

Decision aids: To prepare and help patients for making informed decisions about their care options. This can be achieved through problem definition, option and consequence representation, value elicitation and referral to support services (e.g. patient organization).

Contact with fellow patients: To support self-education and individual responsibility, encourages initiative and gives people an opportunity to help others.

Skills as conditions to patient empowerment

A range of skills been identified as one of the empowerment prerequisites¹⁷. However, the implications for patients and professionals are not always clearly specified^18,19 and the implications for patient empowerment have not been stressed as strongly²⁰. In this paper, we use the components of empowerment in order to define the set of required skills. Table 1 shows examples of the skills that patients and professionals should acquire, or be exposed to, for each defined empowerment component.

Table 1.

Overview of the empowerment components, and their associated skills of patients and professionals

Components of empowerment	Patient skills	Professional skills
1. Communication	Communication skills such as: being able to communicate one’s own needsknowing what questions to put to health professionals)	Communication skills using different channels Access to information from other professionals
2. Education and health literacy	Acquisition of relevant knowledge, and insight with regard to prevention and treatment for healthy living and for illnesses Understanding information Problem-solving skills	Transferring knowledge to patients Knowledge about available and suitable information and educational possibilities Insight into patient knowledge and competences
3. Information about personal health situation	Acquisition of relevant knowledge and insight with regard to treatment and prevention of illness in relation to own condition Interpretation of own data Information understanding	Insight into patient knowledge and competences Availability to explain to patients
4. Self-care (support)	Being motivated Coping Self-efficacy Setting and maintaining goals Following directions and medical advice Reporting progress Managing emotions Problem-solving skills	Transferring the control of health management to patient Being willing to accept patients’ health demands and preferences (change from directive care to a patient-oriented care) Being able/willing to take patients’ wishes, abilities, situations when taking decisions Supporting patient Coaching patient Skills for discussing with patients such as motivational interviewing
5. Decision-making	Decision-making skills Making informed choices Knowing about own limits Knowing about risks and possibilities Interpreting results Goal setting & linking results to health goals	Sharing clinical evidence with patients Knowing the patients’ abilities to make decisions Knowing patients’ choices
6. Contact with fellow patients	Knowing about possibilities of contact with fellow patients Getting motivated to contact fellow patients Being able to make critical judgments about information from non-professionals	Knowing about possibilities of contact with fellow patients Knowing about benefits and risks for patients

Patients should be able to communicate their own needs and know what questions to put to health professionals. Professionals should be able to communicate with patients using various channels. Indeed, both patients and professionals benefit from good communication. For example, Cegala et al.¹⁷ have shown that with highly participative patients, physicians have a more patient-centered communication style.

Competencies for information elicitation, comprehension and use are needed. Patients should have the ability and motivation to gain access to, understand and use information in ways that help them for self-management and maintaining good health. Furthermore, they should be able to know how to acquire relevant knowledge. They need skills on how to interpret their own data and on how to acquire insight into their own condition. Thus, there is a need to help patients to bridge the gap between access to information and understanding information so that they can act upon it. We have shown elsewhere^21,22 that one way to address this issue is to provide consumers with tailored information that is contextualized and personalized, e.g. directly relevant and easily comprehensible to the person’s own health situation. At the same time, health care professionals should be able to transfer and explain knowledge and information to their patients in an understandable way. By using screening questions, for example, professionals can identify the health literacy level of their patients and accordingly tune the way information is delivered to the patient²³.

Self-care activities are intrinsic to self-management. In many routine activities of daily living (e.g. nutrition, physical activity), patients themselves already engage in health-management. A wide range of patient skills are associated with the success of this mechanism, ranging from being motivated, coping, self-efficacy and reporting progress³, as well as planning and coping planning²⁴. The professionals can take on a coaching role here^25,26.

Decision-aids prepare patients for making decisions about their care options. Through problem definition, option and consequence representation, value elicitation and referral to support services (e.g. patient organization), decision-aids tools help patients to consciously make informed decisions about care options. On one hand, patients should be able to make decisions and assume some more responsibility. On the other hand, professionals should have relevant knowledge about treatment options and self-management, and should present it to their patients objectively. As O’Connor et al.²⁷ point out, different decisions require different strategies to communicate risk and support decisions. Both patients and their professionals need to have the ability to weight ‘effective’ versus ‘preference sensitive’ decisions.

Contact with fellow patients advances self-education and individual responsibility, encourages initiative and gives people an opportunity to help others. Patients should have the skills needed to assert themselves; they should have confidence in themselves, and build trust and share empathy for fellow-patients. They need to know how to contact fellow patients and must be able to be critical about information from these non-professionals. Recent research shows that patients have specific needs when searching and sharing information with fellow patients²⁸. From the professionals’ perspective, there is a necessity to become familiar with the positive and negative consequences of the various ways of maintaining contacts with fellow patients.

The skills mentioned above can be both general and specific to a given empowerment component. For example, understanding is a skill is associated with several components. The different competences involved in understanding are closely related to education and health literacy, as well as personal information. Problem-solving skills are another example. They involve a wide range of competences that patients need to have in order to manage their health and to overcome problems associated with their health or chronic condition. This includes, for example, not only knowing when, where and how to seek help, but also managing minor ailments without specialised medical assistance.

A number of skills, such as communications skills are relevant to both patients and professionals, while other skills are patient-specific (e.g. self-efficacy) or professional-specific (e.g. coaching).

Design principles for a four step pathway

In the previous sections, we have reported on the components of empowerment and have described the relevant skills as the derived determinants from these components. When one of the skills falls short, self-management will be less effective. Therefore, it is of the utmost importance to explore which skills are relevant to use e-heath tools and to use this insight in developing them. When one of the skills is insufficient, specific solutions should be provided up by the tools.

In this section, we postulate on how design principles can be derived from the determinants into a pathway of 4 practical steps. We use an example of e-health self-management tool to support the measurement of blood pressure in order to illustrate this pathway (see the use case and Table 2).

Table 2.

Overview of the patient’s skills related to the use case

Components of empowerment	Patient skills
1. Communication	- Reporting experiences and self-measurement results of blood pressure, for example via a PHR
2. Education and health literacy	- Having knowledge related to blood pressure, i.e. - What is high blood pressure? - How can I make the measurements myself? - How can I interpret the results of the measurements?
3. Information about personal health situation	- Having knowledge about: - One’s own health, high blood pressure - Health risks of high blood pressure - Other risk factors for cardiovascular disease
	- Knowing impact of treatment options on own life (medication, lifestyles)
4. Self-care (support)	- Making and executing action plan - Changes in life styles: salt-restriction, more exercising, stop smoking - Adhering to medication - Taking one’s own measurements (blood pressure, salt intake)
5. Decision-making	- Understanding impact of lifestyle changes (salt-restriction, more exercise) and impact of medication intake and usage (with possible side-effects).
	- Making decision about results from measurements (blood pressure and salt intake)
6. Contact with fellow patients	- Knowing which forum to access
	- Being supportive
	- Reporting one’s own experience
	- Sharing tips and tricks (e.g. salt-free recipes), coping (e.g. when eating out)

PHR: Personal Health Record.

The use case

Mr Smith has been diagnosed with high blood pressure and this needs to be monitored and controlled. He needs to understand the risk factors involved. More education is needed to enhance the health literacy of the patient so that he can learn what high blood pressure is. The next step involves encouraging the patient to carry out some self-care activities such as taking blood pressure, interpreting the measurements he will make and changes in daily diet. Decisions will be made during this process, alone or in collaboration with the professional. Experiences and stories from fellow sufferers will be of value, for example with regard to the acceptance of the condition, but also in terms of obtaining tips. Communicating with the professional is an intrinsic part of the self-management activities. Mr Smith is asked to report his measurements and his diet changes

Step 1: Specifying the skills needed for the given self-management activity

The first step is to identify the components of empowerment and the skills of patients and professionals that are relevant for the design of an empowerment-based self-management tool. Table 1 can be taken as a starting point. The skills specific to the given self-management activity are elaborated. This can be done, for example in collaboration with patients and professionals,²⁹ or by using scenarios. In the case of Mr Smith, skills associated with measurements (including the taking and reporting of the measurements, as well as an understanding of the results) are required.

Step 2: Matching the specified skills with the user/ patient profile

This step focuses on determining whether the targeted patients/professionals have enough of the skills specified in step 1. If patients or professionals do not have the required skills, it is then necessary to decide whether and how support can be organized for these skills (see step 3). For example, Mr Smith may have limited skills to formulate his action plan for life style changes.

Step 3: Selecting the alternatives for missing skills

In practice, a tool for self-management will not incorporate all components of empowerment and support all needed skills. Therefore, when support is lacking or insufficient, one must look for alternatives. In some cases, the tool can be extended to include additional support functionalities (for example, graphs or raising the alarm if a measurement is outside the personal guidelines). If this is not possible, alternative means of support, such as educational material and training will have to be found outside the tool. For example, Mr Smith’s understanding of about his health problem may be limited and more education needed so he can learn what high blood pressure is and about the health risks associated with it.

Step 4: Integration in care

This is an important prerequisite for the success and application of the empowerment-based tool for self-management. Adaptations will be required so that the tool can be integrated in the care process. For example, in the case that the measurement of Mr Smith’s blood pressure is high, he should then be able to easily contact his healthcare professional. Preferably, the measurements made by Mr Smith will also have been recorded in the Electronic Patient Record of the healthcare professional so that the appropriate advice can provided to Mr Smith.

Discussion

E-health tools bear the promise of facilitating self-management. We have postulated that these promises can only be captured when the tools are based on patient empowerment components. The components and the coherent skills of patients and professionals have been described. The approach sketched above raises questions with respect to the dynamic fine tuning of a specific set of principles, the proof of concept, automated skills testing to feed the design process, the testing for safety and for efficacy, and the implementation of the e-Health tool.

The first question is: how can one fine-tune a specific set of principles? In other words, how can one specify the design such that it suits a large group of patients and a large group of doctors? How can one personalise these settings? How to proof the principles and the concept? How one can further personalize the specification and realization process by making use of measurement of skills of both the patient and the doctor.

A living lab approach, as commonly used in the field of telecommunications, may be the right vehicle³⁰. In a living lab setting, the patients and doctors are confronted with a prototype realization in an early stage of the development process. The gradual upgrading of both the specifications and the realization comes with intensive testing and user feedback. In a living lab setting, the behavioral change of the patient and the doctor can be observed under laboratory conditions. Observation should be fed into the (re-)design process until further improvement does not pay off. Early market introduction with post-market surveillance usually creates a vast amount of user adoption information. The surveillance should involve both patients and doctors.

One may ask if the e-health tool is considered a medical device, as defined by the European Medical Device Directive (MDD)³¹ and its recent revision regarding the use of information and communication technology³², and its USA equivalents³³. This question should be put to the legally competent authorities of the countries in which the tools will be used. Regardless of the legal aspects, the European MDD provides a very elaborate framework with respect to safety management.

Efficacy can be tested in a controlled trial with a double trial group of patients and doctors and a double control group, also with patients and doctors. The latest insight in testing behavior change should be included to ensure that the chosen intervention is well described^34–38. Finally, the implementation of an e-health tool for self-management should clearly specify the characteristics of the internet-based intervention associated with the tool using, for example, the framework for the development of a science of internet-based interventions proposed by Webb.³⁹

Conclusion

E-health holds the promise of delivering healthcare at a low cost, while services can be tailored to the specific needs and capabilities of patients and doctors. It is a promise which is not yet fully realised. To quote Sir William Henry Bragg, who won the Nobel Prize for Physics in 1915: “The important thing in science is not so much to obtain new facts as to discover new ways of thinking about them”. This notion triggered our thinking about designing the next generation e-health tools to support patients in self-management. We postulated a pathway to comply with the design principles and build on components of patient empowerment drawn from literature. We call on the scientific community, in collaboration with healthcare partners, to work on this new pathway.

Footnotes

None.

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

References

Thorpe

. Cost sharing, caps on benefits, and the chronically ill — a policy mismatch. N Engl J Med 2006; 354: 2385–2386.

Bloom

Canning

Fink

. Implications of population aging for economic growth. NBER Working Papers 2011: 16705.

Bodenheimer

Lorig

Holman

Grumbach

. Patient self-management of chronic disease in primary care. JAMA 2002; 288: 2469–2475.

Barlow

Wright

Sheasby

Turner

Hainswirth

. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns 2002; 48: 177–187.

Lorig & Holman. Self-management education history: Definitions, outcomes and mechanisms. Ann Behav Med 2003; 26: 1–7.

NPCF (Dutch National Federation for Patients). ‘Zelfmanagement 2.0: over zelfmanagement van de patiënt en en wat eHealth daarvan kan bijdragen’ [‘Self-management of patient and how e-health can contribute’], http://www.npcf.nl/components/com_virtuemart/shop_image/product/Zelfmanagement%20eHealth%202%200.pdf (2009, accessed May 2011).

LAN. ‘The Landelijke actieprogramma Zelfmanagement’ (‘National Self-Management Action Program’), www.zelfmanagement.com (2009, accessed May 2011).

Monteagudo Peňa

Moreno Gil

. ‘E-health for patient empowerment in Europe’, http://ec.europa.eu/information_society/activities/health/docs/publications/eh_era-patient-empower.pdf (2007, accessed May 2011).

‘eHealthNu’, www.eHealthNu.nl (2009, accessed May 2011).

10.

van

Belt

Engelen

Berben

Schoonhoven

. Definition of health 2.0 and medicine 2.0: a systematic review. J Med Internet Res 2010; 11; 12: e18.

11.

Schermer

. Telecare and self-management: opportunity to change the paradigm? J Med Ethics 2009; 35: 688–691.

12.

Bosworth

Powers

Oddone

. Patient self-management support: novel strategies in hypertension and heart disease. Cardiol Clin 2010; 28: 655–663.

13.

Lustria

MLA

Cortese

Noar

Glueckauf

. Computer-tailored health interventions delivered over the Web: review and analysis of key components. Patient Educ Couns 2009; 74: 156–173.

14.

Portnoy

Scott-Sheldon

LAJ

Johnson

Carey

. Computer-delivered interventions for health promotion and behavioral risk reduction: a meta analysis of 75 randomized controlled trials, 1988–2007. Prev Med 2008; 47: 3–16.

15.

Chodosh

Morton

Mojica

Maglione

Suttorp

Hilton

Rhodes

Shekelle

. Meta- analysis: Chronic disease self-management programs for older adults. Ann Intern Med 2005; 143427–143438.

16.

Alpay

Blanson Henkemans

Otten

Rövekamp

AJM

Dumaij

ACM

. E-health applications and services for patient empowerment: Directions for best practices in the Netherlands. Telemed J E-Health 2010; 16: 787–791.

17.

Cegala

Post

. The impact of patients’ participation on physicians’ patient-centered communication. Patient Educ Couns 2009; 77: 202–208.

18.

Funnell

Anderson

. Empowerment and self-management of diabetes. Clin Diabetes 2004; 22: 123–127.

19.

Gustafson

McTavish

Boberg

Owens

Sherbeck

Wise

. Empowering patients using computer based health support systems. Qual Health Care 1999; 8: 49–56.

20.

Lorig

Ritter

Laurent

Plant

. Internet-based chronic disease self-management: A randomized trial. Med Care 2006; 44: 13, 964–971.

21.

Alpay

Verhoef

Te’eni

Putter

Toussaint

P.J.

Zwetsloot-Schonk

J.H.M.

Can contextualization increase understanding during man-machine communication? A theory-driven study. Open Med Inform J 2008; 2: 82–91.

22.

Alpay

Verhoef

Xie

Te’eni

Zwetsloot-Schonk

J.H.M

. Current challenge in consumer health informatics: Bridging the gap between access to information and information understanding. Biomed Inform Insights 2009; 2: 1–10.

23.

Jeppesen

Coyle

Miser.

Screening questions to predict limited health literacy: A cross-sectional study of patients with diabetes mellitus. Ann Fam Med 2009; 7: 24–31.

24.

Sniehotta

Schwarzer

Scholz

Schüz

. Action planning and coping planning for long-term lifestyle change: theory and assessment. Eur J Soc Psychol 2009; 35: 4.

25.

Huffman

2007. Health coaching: A new and exciting technique to enhance patient self-management and improve outcomes. Home Healthc Nurse 2007; 25: 271–274.

26.

Blanson Henkemans

van der Boog

Lindenberg

van der Mast

Neerincx

Zwetsloot-Schonk

. An online lifestyle diary with a persuasive computer assistant providing feedback on self-management. Technol Health Care 2009; 17: 253–267.

27.

O’Connor

Légaré

Stacey

, Risk communication in practice: the contribution of decision aids. BMJ 2003; 327: 736

28.

Overberg

Otten

de Man

Toussaint

Westenbrink

Zwetsloot-Schonk

. How breast cancer patients want to search for and retrieve information from stories of other patients on the internet: an online randomized controlled experiment. J Med Internet Res 2010; 12: e7.

29.

Nambisan

. Models of consumer value cocreation in health care. Health Care Manage Rev 2009; 34: 344–354.

30.

Almirall

. Living Labs and open innovation:roles and applicability. Electronic Journal for Virtual Organizations and Networks 2008; 10: 21–26.

31.

MDD. http://eurlex.europa.eu/LexUriServ/LexUriServ.do?uri=CELEX:31993L0042:EN:HTML . (2011, accessed on April 2011).

32.

MDD. http://www.mhra.gov.uk/Howweregulate/Devices/RevisionstothemedicaldevicesandAIMDDirectives/index.htm . (2011, accessed on April 2011).

33.

Chai

. Medical device regulation in the United States and the European Union: a comparative study. Food Drug Law J 2000; 55: 57–80.

34.

Anderson

. New MRC guidance on evaluating complex interventions. BMJ 2008; 337: a1937.

35.

Hardeman

Sutton

Griffin

Johnston

White

Wareham

. A causal modelling approach to the development of theory-based behaviour change programmes for trial evaluation. Health Educ Res 2005; 20(6): 676–687.

36.

Michie

Fixsen

Grimshaw

Eccles

. Specifying and reporting complex behaviour change interventions: the need for a scientific method. Implement Sci 2009 4; 40: 40.

37.

Michie

Prestwich

. Are interventions theory-based? Development of a theory coding scheme. Health Psychol 2009; 29(1):1–8.

38.

MRC Health Services and Public Health Research Board. A Framework for Development and Evaluation of RCTs for Complex Interventions to Improve Health. London: Medical Research Council; 2000.

39.

Webb

Joseph

Yardley

Michie

. Using the internet to promote health behavior change: A systematic review and meta-analysis of the impact of theoretical basis, use of behavior change techniques, and mode of delivery on efficacy. J Med Internet Res 2010; 12: e4.