Patient information sheet
The study has been registered with the ISRCTN registry.
Invitation and brief summary
A personal health record (PHR) is a collection of health-based information that is documented, maintained and shared by the owner. Common examples of PHRs include: MyFitnessPal, MY FOOD COACH, H2OVERLOAD, fitbit, FreeStyle Libre, One Drop etc.
We are looking for people who:
- Are willing and able to provide informed consent for participation in the study;
- Are male or female, aged 18 years or above;
- Have at least one long term condition and are treated outside hospital;
- Can self-administer their medication;
- Often (at least once a week) use a PHR to manage in full or partially his/her medication;
- Able to communicate freely.
We invite you to take part in a telephone or online (Skype, Viber etc) interview and to fill in a survey. The aim is to learn from your views and experiences of using a PHR to manage your long term condition:
- what PHR features are useful to you;
- how do you use your PHR;
- what benefits and problems do you face using a PHR to manage your medication.
You must be 18 or over and able to take part in this study.
The annual NHS England spend on medication was £15.5 billion in 2015. Every year more and more medications are prescribed by NHS England. It is predicted that more than a third of all patients with a long term condition in the UK do not adhere to their medications. Medication non-adherence is related with higher number of hospital admissions, adverse drug reactions, nursing home admissions and increase in health care and social costs.
Current NHS policy aims to aid patients to make the right choices and support clinicians by providing access to all the health-essential data and by helping them to make the most of the technology.
PHRs are useful for patients that have chronic conditions. PHRs give patients the ability to self-manage their health, empower them, increase access to care especially in remote areas and improve medication adherence. Some PHRs are connected to an electronic health record (EHR) that is held in a hospital or GP. Figure 1 shows how the EHR and PHR differ for medical records.
We will interview and survey up to 40 patients. We will review previous research and existing technology to determine the PHR design features that improve patient’s medication adherence.
The survey will include 3 globally known scales (MAQ, SF-36 and BFI) and demographic data such as: age group, gender, ethnicity, education, financial status, marital status and employment.
Based on the interview and survey results, we will develop a theoretical model to determine, what works from whom in what circumstances.
This will be based on the “Framework method”.
The mixing of the interview and survey results will be presented in joint displays like this one.
What would taking part involve?
You will be asked to provide contact details (telephone, Skype or email), your age and gender. This is because we need to get a number of age groups and genders in our study. If you are selected, you will be asked to agree a proper time for a 20-minute telephone or online interview, followed by a 10 to 15 minute online survey. The interview will be recorded and transcribed by a professional service who work under a strict confidentiality contract (audio only).
We will keep your contact details for 1 year after the study ends. No personal information will be released from the interview, or disclosed outside of the research team, except with your clear consent. Interview recordings, survey answers and transcripts will be securely stored on University of Portsmouth computers, accessible only to the research team. We will analyse the information gained from the interviews to summarise patient views. Our research team includes patient representatives, who will participate in the analysis but will not have access to any identifiable information.
What are the possible benefits of taking part?
We do not expect that there will be any direct benefits to you from participation; however, taking part in research is a valuable contribution to society. The experiences and views of patients are central to this study.
What are the possible disadvantages and risks of taking part?
When we analyse the interview and survey data, it is possible that we may realise that the circumstances of a reported experience may reveal your identity or that of a family member. Should this occur, we would contact you again to see if you are still willing for your story to be included.
It is possible that the study may lead you to relate some distressing experience about yourself or someone else. Should that happen, we may need to escalate the situation to the responsible clinician or relevant healthcare regulator so that it can be addressed. We would ask for your consent to do this, but in unusual situations (such as the call being interrupted, or if you become unwell) we might need to escalate without your specific permission. In rare circumstances, we may recommend that you discuss the situation with your general practitioner. You can also contact the Patient Advice and Liaison Service on 0800 917 6039.
If you would like to participate, please fill the online form at take-part or telephone 023 9284 6784 or 07522761996 and and we will email you a form to fill in and return. You are free to withdraw from the study at any point. If you are interested but have further questions before you agree to take part, please complete the online form at contact-us or telephone 023 9284 6784 or 07522761996.
The results of this study will be available to participants and published in academic journals, reported at conferences and publicised through patient forums, social and mainstream media and the University of Portsmouth thesis database. Patient reps will be involved in our dissemination.
University of Portsmouth is the sponsor for this study based in England. We will be using information from you in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. University of Portsmouth will keep identifiable information about you for 1 year after the study has finished.
Τhe NHS recruitment sites will keep your name and contact details confidential and will not pass this information to anyone else. Τhe NHS recruitment sites will use this information as needed, to contact you about the research study, and make sure that relevant information about the study is recorded for your care, and to oversee the quality of the study. Certain individuals from University of Portsmouth and regulatory organisations may look at your medical and research records to check the accuracy of the research study. University of Portsmouth will only receive information without any identifying information. The people who analyse the information will not be able to identify you and will not be able to find out your name, or contact details.